Restarting Enbrel

I found that the longer you keep from doing something (e.g. posting a new blog post!) then the harder it can be to start. Rather than continue to procrastinate I have decided just to jump in.

So what am I currently on? For the longest time I was on daily Lyrica – between 300mg to 450mg per day – prescribed for my RLS but I am sure was helping with controlling some pain from PsA; Avara (leflunomide) 20mg per day – for PsA; Enbrel 25mg SC injection once per week – for PsA; occasional Voltaren SR (slow release) 100mg at night if I had been waking with back or rib pain – this usually may happen if I lengthened out the time between Enbrel doses – for PsA; Lipitor 5mg per day to keep cholesterol in check; Tramadol 50mg as needed for breakthrough pain from PsA, and for controlling RLS.

So you are probably asking how did I fare on that medication regime? Well, firstly the typical dosage for Enbrel is 50mg per week (2 injections of 25mg) and I found that I was keeping the pain away with just one injection and so was doing that. Oh, I also need to point out that since 2016 I have been buying all my own medication as my health insurance of my employer did not cover pre-existing conditions. So I had to make sure that I only took what I really needed as it was coming out of my salary.

Occasionally I had a breakthrough of lower back pain before my next scheduled dose of Enbrel, and in that situation I would take it earlier. Also, occasionally I forgot for a few days that my Enbrel was due, and so would end up taking it later than scheduled.

Overall, I was pain free and mostly skin psoriasis free apart from a few persistent patches on my scalp.


The biggest cost of course is Enbrel, which in Thailand goes for about USD$250 per dose (i.e. per week for me). Lyrica is also expensive, going for about USD$75 for a box of around 42 capsules (150mg each). Arava here is around USD$100 for a bottle of 30 tablets (20mg each). Tramadol is pretty cheap when purchased via hospital, but I can’t recall how much I paid for the last prescription. Tramadol purchased via shady OTC pharmacy was more expensive of course. I also was on Percocet on and off, which I alternated with Tramadol (and sometimes together with Tramadol) for breakthrough pain, and mostly for control of RLS. Percocet was expensive through the doctor who was prescribing it for me as it was from a private, high-end hospital.

Reducing Meds

The project I was working on for my job came to an unexpected end around a year ago, and so I was let go along with the rest of the project team. Since then I have been unemployed and so have been using up my savings. Unfortunately, this has resulted in having to stop a lot of medications as keeping my kids in school and a roof over our heads has taken priority.

So, which medications did I quit, and how did I quit them? Well Enbrel is obviously the biggest cost at over USD$1,000 per month, so I started by trying very hard to push out the time between doses e.g. 2 weeks, 3 weeks, etc., and usually only taking an injection when the pain was just getting too much. Where was the pain? As mentioned above I’d suffer from lower back pain on waking – but typically this wasn’t too much. However, this lower back pain is what increased a great amount when I pushed out the time between doses. As a result I was taking Voltaren 100mg SR far more regularly. I had raised stress for a while as I was worried about the effect regular Voltaren would have on my cardiac system as well as my microbiome, however as my pain increased I came to terms with the compromise.

I cut out Lyrica completely over a period of a few weeks and was surprised that I felt no untoward effects. There is some controversy about whether Lyrica’s effect is real or placebo, and I guess in my case it was placebo. Right now I am still off Lyrica. I also cut out Avara for a period, but started again after psoriasis and arthritis symptoms got to be too much.

Current Status with Reduced Meds

So how has reducing my medication affected me? My last dose of Enbrel was 1st August last year (2018). At that time as mentioned above I was pain free (aside from occasional lower back pain on waking which would require some analgesic pain relief) and mostly skin psoriasis free, apart from a few persistent patches on my scalp.

I am pretty consistent with keeping a pain score record, and looking back to my records from that time I can confirm that I only recorded lower back pain and RLS i.e. no other areas of pain. My fingernails were also clear and normal.

How about today? Here are my hands. Note the pitting and deformation of the fingernails – especially on my left hand – as well as the swelling of the finger joint (depicted in the rectangle) and psoriasis skin spot.

fingernail psoriasis
swollen finger joint from psoriatic arthritis
Left Hand
Right Hand
Left Thumb
Right Thumb

My thumbnails are about 90% normal, however, pitting and white spotting is noticeable.

That swollen finger joint on my left hand can get very painful, to the point of interfering with my concentration and being agonizing (6-7 on the pain scale). Note the picture below from the 25th January when it was very swollen and an angry red color:

Left Hand, Swollen Joint in Index Finger

Apart from the changes in my physical appearance from psoriasis, at this time (February 2019) I’m tracking pain in 20 different joints, including hips, shoulders, knees, feet, hands, neck etc. Pain comes and goes from each site with only a few being consistently painful, such as my neck. Increased pain has resulted in a large increase in taking analgesics, although honestly speaking the pain isn’t really in control.

It has now got to the point where the pain is so bad in my left heel area that I limp, so I’ve decided to buy another 4 week supply of Enbrel (USD$1,000+) to try and get that under control, putting it on my credit card. It is a difficult decision as right now I have no way to pay off that credit card debt. However, I think it is necessary in order to a) be able to walk normally when presenting for an interview for a job, and b) reduce the systemic inflammation which must be present in my body and likely stressing my cardiac system. At the time of writing I’m waiting for the hospital to call me saying that the Enbrel has arrived (they had to order it in). At the same time I’ll see the doctor and try and get something better for my pain – although I don’t have much confidence that the doctors in this area are very competent at dealing properly with a chronic disease such as my PsA.

In restarting Enbrel I did a little research as I wanted to know if I needed to initially take a higher, loading, dose. Interestingly, I found that researchers note that often once someone stops taking a biologic it typically is not effective at all if the patient restarts it, particularly with Remicade. However, Enbrel is the exception with patients usually have a good response on restarting, although never as good as the first time using it.

Now I understand why my Rheumatologist put me on Enbrel after I had stopped Remicade!

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Lyrica for Back Pain

Several years ago my rheumatologist put me on Gabapentin (Neurontin) to help control my RLS. It worked at first however as with all the meds I have taken for RLS, the effectiveness waned over time. I was up to 1.5 grams per night and it wasn’t effective. So a pain management specialist changed me to Lyrica (Pregabalin), taking 150mg in the morning and 300mg at night. Again, it worked at first but then over time lost effectiveness against RLS. I have however continued to take it as psychologically I guess it helps me, and also recently I have more evidence that it is helping with my back pain.

I have typical PsA back pain, i.e. nothing during the day and then it comes on during my sleep, to the point that the back pain is so intense in the morning it wakes me up. Having a stiff back in the morning is one of the diagnostic points of PsA. Anyway I missed a couple of nightly does of Lyrica and found that my back pain got much much worse. I would wake at 3am or 4am from the pain. Sleep deprivation is certainly not good for health. Anyway, I have to remember to take my Lyrica!

I am now working in China, and China always amuses me with its “quirks”. One of the quirks is the approval process for medications. Like any country China has a drug authority which is responsible for approving any medications available for sale and prescribing. However China differs from other countries in that the approval is only given for a dose/type specific medication! What does that mean? Take Lyrica as an example. When Lyrica went through the approval process in China, they used the 75mg capsule. In the West (and in Thailand) the DRUG gets the approval, so after approval is given then any dosage of the drug is now legal, e.g. Lyrica can come in 75mg or 150mg capsules. In China though, only the DOSE or TYPE that went through the approval process, is approved! So since I can take 450mg of Lyrica per day, and only the 75mg capsule is approved in China, I have to take 6 capsules per day! In Thailand, I could get the 150mg capsules and only would need 3 per day. In China the 150mg would have to go through a totally new application in order to become legal, even though it is the exact same drug as the 75mg! Crazy.

In a box, there are only 8 capsules, so I go through just about 1 box per day. When I get 3 months supply of Lyrica, I need about 12 boxes. I have a huge bag I have to take out. It is the same for Leflunomide (Arava). I take 20mg per day and in Thailand they have 20mg pills. In China they only have 10mg. It is even worse for my Enbrel. In Thailand I could get the prefilled syringes – which are soooooo convenient. In China though, the prefilled syringes would have to go through a totally new application (even though the Enbrel is the same), and the supplier just can’t be bothered. So in China only the old style are available and I have to mix the water with the powder then transfer to a syringe etc.

In some areas China are so backward! I have heard that they only approve one type in order to discourage copies, however to my logic if there is only one type of a drug available then any counterfeiters only have one “type” to copy!


Posted in Psoriasis Treatment, Psoriatic Arthritis, Restless Leg Syndrome | Leave a comment

Back on Enbrel


Did you miss me 🙂

In the last year and a half I’ve changed jobs and changed countries, so things have been hectic to say the least. I think my last post I mentioned my platelet levels were dropping and so I had stopped Remicade. Normal (btw I’ve noticed that normal levels differ slightly between countries according to how the hospital or health department view the science) is from 100 to 400, and my platelets at the lowest dropped to 94. They went up to around 110 and last check was 134. My arthritis came back after about 8 months off the Remicade, and so my rheumatologist started me back on Enbrel. So for those on Remicade, you may have heard that once you stop Remicade the chance of having a life threatening reaction if you take it again is very high. However apparently there is not much research around about whether this is true or not (I guess since the numbers of people who try this is very low).

I attended a conference a few months ago and was surprised to meet a prominent US doctor who was on the panel of researchers involved in researching and doing the patent application for Remicade. I asked him about the possibility of reaction from restarting Remicade (since Remicade seems to have a better effect for me than Enbrel), and he believed that there is no research that shows there would be any greater risk than for example, me restarting Enbrel.

Anyway, I’m back on the Enbrel and don’t have any arthritis issues, apart from bad lower back pain after sleeping if I miss my dose for a few weeks. Only one dose per week (usually is two) and I self inject at home. My RLS still sucks and it appears that Lyrica isn’t doing anything for it – although I keep taking it as I think it is helping with my lower back pain from sleeping. Low doses of tramadol was helping for RLS but stopped working about 4 weeks ago. I started a RLS / Pain record again and have been meeting my doctor weekly to evaluate it. He decided to give me a break from tramadol as I had been pushing up the dose to more than 300mg per day to try and get the RLS down, and he has put me on percocet instead. So I’ve been off tramadol for about two weeks – and interestingly I’ve found my mood has vastly improved. I’m not sure if it is because the tramadol was inducing depression, or the percocet is making me feel wonderful (I’m taking 1 (5mg) about every 4 hours). Maybe it is both.

I’ve listened to a recent Joe Rogan podcast where he interviewed a really interesting guy called Wim Hof. Wim Hof has had his claims of being able to control his immune system verified through proper scientific studies through a University in the Netherlands. What he practices seems to be not too difficult to do, and I plan to start and see if I can influence my RLS.

I’ll let you know what happens.

Posted in Enbrel, Psoriasis, Psoriatic Arthritis, Remicade, Restless Leg Syndrome | Tagged | Leave a comment

No Remicade for 21 Weeks

My last dose of remicade was 24th December last year.  Everything seems to be pretty much ok so far, I don’t have any swollen joints in my fingers – which I had when my arthritis was active.  Every small ache or pain that I get has me immediately thinking about whether it is a joint pain or muscle pain – and because I’m so active in the gym everything so far has just been muscular pain I think.  I do have a slight pain in my right hip joint region now and then – and will keep an eye on it.  The situation has become a bit complicated as my restless legs isn’t being well controlled by lyrica and I’ve been self dosing with some percocet I have on hand during the day.  The percocet works really well for restless legs (of course) however I’m aware that if I do have some arthritis returning then the percocet could be masking the pain.  I still have a ton of tramadol left but I’m really adverse to taking that due to my previous bad experience withdrawing from it.  Logically I should go and see a neurologist to get on top of my restless legs but unfortunately my one experience with a neurologist here left me with a strong impression that they don’t take the condition seriously.  I definitely got the impression that the doctor didn’t think my concerns were legitimate.

I guess I should go and see another neurologist but I’m just so tired of seeing so many doctors.  And the percocet controls the symptoms really well so I’m happy at the moment.  I guess once my stash of percocet gets low I’ll revisit this issue.

In my last post I mentioned that my platelets may have been low and that this could have been caused by the remicade.  I was due to go back and see the hematologist but missed the appointment.  I have an appointment booked with my anti-aging doctor in June and will have my lipids, blood profile etc. tested so will find out then if there is a problem with my platelets.

So as far as I’m aware my arthritis is in remission!  Long may it stay that way!  Yes I am very very happy.  My psoriasis hasn’t disappeared and to the contrary since I’ve stopped taking a TNF inhibitor it has come back a little worse in places.  It has increased on my scalp and I have it back in my genital area.  Yes I know that some people may now be saying “eewww” but I want to be honest about how people suffer with psoriasis.  Guys with psoriasis can get it on their genitals – and it is not at all uncommon.   Yes it really really sucks!  I’m back to the regular application of steriod cream and it is ok.  I’m certainly happy to be off the remicade if it just means some application of cream. I do have a little change in my fingernails – I’ve just taken a pic so you can see:


However I’m happy with a little bit of psoriasis if it means the arthritis is gone!  My restless legs are pretty bad during the day while I’m sitting at my desk at work.  I’m determined to try out having a standing desk as I think my legs will be much better if I’m standing.  Unfortunately it seems like standing desks haven’t made it to Bangkok yet so I’ll have to work out some solution.

Have happy thoughts people!

Posted in Fingernail Pitting, Pain, Psoriasis, Psoriasis Treatment, Psoriatic Arthritis, Remicade, Restless Leg Syndrome, TNF Blocker, Tramadol | Tagged , , , , | Leave a comment

Arthritis in Remission? Ceasing Remicade

You may have noticed that the panel to the right showing “date of next remicade” is empty.  It has been 14 weeks since my last dose of remicade and I have no arthritis pains.  In fact my psoriasis doesn’t appear to be too bad (touch wood) even with the length of time since my last dose.  I have some scalp psoriasis and it seems to have got a little worse in my ears, but I haven’t  developed any on my elbows – which usually has persistent psoriasis!

I’ve blogged before that I believe that my psoriatic arthritis is in remission but how I was too scared to stop the remicade in case the arthritis comes back much worse – which happens in some people.  Even more scary – for some people who stop taking remicade and then the arthritis returns, remicade no longer works.

So what has changed my mind?  Well my rheumatologist always checks my blood, liver & kidney before I get my remicade.  This last time I had my blood checked my platelets have been low.  My rheumatologist told me that some people on long term biologics develop “drug induced lupus”.  She gave me a handout to read up about lupus and told me that generally people who do develop drug induced lupus don’t get it as severe. Wow – this got me worried.  So seeing that I am pretty sure I’m in remission my choice is to continue the remicade – with the risk that I do develop lupus – or take a break and see if my platelets get back to normal.  This was a couple of weeks ago when my remicade was due and at the time we decided to hold on the remicade and test my blood again in 2 weeks.

So yesterday I had my blood tested and again my platelets are low.  I told the rheumatologist that I want to stop the remicade and monitor to see if my arthritis returns.  She also said that another option if the arthritis does return is to change biologics. She also asked me to see the hematologist to see if any of my RLS drugs or my vitamins could be the cause of the low platelets.  So I saw the hematologist yesterday afternoon and she said that my platelets – although being under the normal range – aren’t that low that she is concerned.  She said to continue taking all my normal meds and vitamins and see her again in 3 weeks when we will check my blood again.  She also said that they will test to see if I have any hepatitis as this can cause low platelets.

So I’m officially off biologics!  Everything is ok so far but it is early days.  One of my fears is that since the remicade was helping against the psoriasis as well as the arthritis, that my psoriasis will return – and I had it pretty bad before.  But as I mentioned above it seems ok so far.  Maybe my diet change and increase in exercise is helping?

Prescription pill bottles in waste basket

Posted in Psoriasis, Psoriasis Treatment, Psoriatic Arthritis, Remicade, Remicade Administration | Tagged , , , , | Leave a comment

Kids & Psoriasis

With psoriasis in my family line I always have the fear just hovering in the back of my mind that perhaps my kids will inherit the same disease.  Every time I see them scratching or they get a rash my breathing gets a little faster and I obsess over looking at what they are scratching to see if it looks like psoriasis.

Fortunately so far it appears that they have inherited the appropriate gene from my wife to block whatever causes psoriasis.

Anyway I saw an article today that made me think again of my kids and psoriasis.  You can read about the study here.  I got asked to click through some pop-up boxes when I accessed the article, but in the end the article comes up.  It is “Key studies show distinctive features of pediatric psoriasis“.


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Lyrica (Pregabalin) better than Dopaminergic Agonists (Pramipexole)

Just after my doctor started me on Lyrica I was delighted to see a study come out comparing Lyrica vs Mirapex that showed Lyrica being just as effective as Mirapex and with much lower risk of augmentation!  You can read the study here.


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Finally an update! RLS

I’ve experienced the blog cycle of death.  The longer I spend away from blogging the more that happens which I tell myself “I must blog about that”, but end up doing nothing.  So the list of stuff I should blog about gets longer and longer to the point that in the end it just seems to be too long and I wonder where I will start and how I will get through all the information!

But in the end I just looked this death cycle in the eye, gave it a slap, and here I am.

So in my last post I left you with my experiment that I was going to reduce my coffee and all artificial sweeteners to see if it made a difference to my restless legs.  I was also having trouble with raised results from my liver function tests and LDL cholesterol, and I was trying to raise my Vit D levels.

Well after that things actually got a little worse.  The change in diet made no difference at all to my RLS.  In fact it seems like I had more difficulty controlling RLS.  I was taking 1.2-1.5 grams of neurontin at night and it didn’t seem to help at all.  Every night I would need to take at least 1 tramadol to control the restless leg symptoms, and more usually 2.  It got to the point where I was having absolutely horrible nights’ sleep beyond the normal degree of horror I was accustomed to.

If I was brave I would take my neurontin around 7pm with the aim that by 9.30pm there would be a maximum blood plasma level to stop the RLS.  However if by 9.30pm I had RLS, or if I tried to go to sleep and ended up getting RLS and not being able to sleep – by which time it would be 10pm or 10.30pm – then I’d have to take a tramadol.  Then I’d have to wait another hour for it to kick in and work!  So by the time I could actually get to sleep would be 11.30pm.  I was often waking up at 2am-3am with an achy back too, so would have to take something for that – wait an hour for it to work – and get back to sleep.  So many days of poor sleep.

I had been off coffee and artificial sweeteners for 6 weeks yet was taking both neurontin and tramadol (in increasing doses) to control the RLS – and now back pain which was waking me in the early hours.  It all came to a head one evening when I suddenly got horrible uncontrollable shivering yet had no fever.  I had an awful feeling it was withdrawal symptoms from tramadol.  I quickly took 100mg and after an hour felt better, but only for a while.  That night and the following day was one of the worst I’ve had.  It seemed like no matter how much tramadol I took I couldn’t stop the withdrawal symptoms.  I’d get shakes, racing heart, and have to stave off panic attacks.  Over the course of the day I must have taken about 800mg of tramadol – which of course is way higher than what one should take.  I finally called a doctor friend who explained that tramadol is an agonist/antagonist so if one takes too much then it can actually push you into withdrawal and he advised not taking anymore for at least 8 hours.  I’m not sure if that is true but I followed his advice and slowly began to turn around.

It was a horrible few days – but it made me determined to get on top of this damn RLS and get rid of this reliance on tramadol.  I managed to get on to a regular dose of tramadol to control withdrawal and the rls – dosing every 8 hours or so with 100mg – thus taking about 300mg per day.  I slowly began to taper down.  However I knew I couldn’t just quit as I had nothing to control these damn restless legs!  What to do?

At the same time I decided to get my health into much better shape.  I had not been going, or had been inconsistent in going, to the gym.  I contacted a highly recommended personal trainer / diet guru online (who lives in Florida) and paid up for 3 months supervision and guidance.  Right away she put me on 5 days gym every week and cardio every day!  This as well as changing up my diet – putting me on 10% carbs, 30% protein and 60% fat (healthy fats).  Wow. To be honest at first I had to wrestle my mind into submission as it was pulling up a ton of excuses on why I couldn’t do cardio everyday, or gym 5 days per week.  I knuckled down and got into it.

After 3 weeks I had a follow-up appointment with my doctor to check my lipid profiles and liver function tests.  This is the doctor that put me on a very low dose statin since my LDL is always so high.  My results came back perfect!  Really.  I was absolutely stunned – again!  My LDL, Cholesterol, LFTs etc. were all normal!  My cholesterol and LDL were low!  Also my blood pressure was terrific – measuring in at about 110/60.

So I was definitely on the right track. Again, this was about 4 months ago.  At that time I also had this niggling nerve pain in my foot so I went to see the spine specialist. I ended up having an MRI which showed no problems (and to this point I still have this niggling nerve pain), however he took my medication record and was concerned I was taking so much tramadol.  So he sent me to the pain specialist.  At this point I’m pretty sick and tired of seeing so many doctors, and sick and tired of this RLS.  Anyway the pain specialist immediately took me off neurontin (since it didn’t seem to be doing anything) and put me on Lyrica.  She was concerned about me waking so frequently with back pain so put me on a low dose of Cymbalta – which is an SNRI – as one of the uses for Cymbalta is chronic lower back pain.

I kept an accurate record of my medications and found that within a week I was sleeping through the night!  No back pain.  I was really impressed with this doctor.  There was no change in my RLS so the doctor increased my dosage of Lyrica to 300mg.  150mg in the morning and at night.  She said that I needed to maintain a good blood plasma level of Lyrica.  Over the next couple of weeks I only needed tramadol 3 times!

So that is where I am with my RLS.  I have just had a break from the Gym for about 3-4 weeks as I got sick with a cold – and then got another cold right after the first one finished.  I went to the doctor after about 3 weeks of being sick with the cold and she berated me for taking so long to see her since I’m on immunosuppressants.  She sent me for an x-ray to rule out TB (which really scared me!) and put me on antibiotics which seem to have done the trick.  So this week I’m back at the gym and I’ll start cardio again soon too. My diet remains the same and I’ve certainly lost some fat.  My RLS seems to have been worse since I’ve had the cold but hopefully it will settle again.  It is much better though now I’m on Lyrica.

Finally finished an update!  I’ll give an update on my PsA next.


Posted in Low Carb Diet, Psoriatic Arthritis, Restless Leg Syndrome, Tramadol | Tagged , , , | Leave a comment

Restless Legs Update

Hello everybody!  I haven’t been blogging for a while – mainly because I don’t have anything new or interesting to add.  Such a boring life I lead….. ha ha ha.

Anyway a week or so ago I got an interesting comment from James on one of my previous posts on Restless Leg Syndrome.  James mentioned that he believed the restless legs may be caused by artificial sugar substitute – and specifically named Aspartame and Acesulfame K.

Now at my last Remicade infusion my doc took my blood as usual and sent it off to the lab to have my liver function tests, LDL and blood composition done.  All the usual & typical tests.  As you may also remember from my previous posts I recently started on statins to bring down my LDL which at the height of my low carb dieting hit 247 and at my last reading was 174.  It should be between 100 – 129.  I was interested to see what kind of difference the statin had made.  I also wondered if it was high on my last reading as I had a big blowout cheat day the day before I had my blood test done.

Anyway the doc had my blood taken and did my usual physical checkup and then sent me to the clinic to get my remicade dose.  About 2 hours after that my phone rang and I looked down to see an unknown number.  I answered and it was my doc on the phone!  I was surprised as I had never had a call from her before.  She told me that my liver function test came back very high and she wanted me to stop taking the statin right away.  She also told me to stop taking my neurontin (for restless legs).  She sounded very worried – which in turn got me worried.  She did not give me any alternative for the neurontin (which afterwards I thought wasn’t that professional) and asked me to make an appointment to see the Internal Medicine doctor as soon as possible to discuss the statin.  In my shock I didn’t ask about the LDL level.  Before I got my remicade dose that day the nurse did not give me any anti-histamine.  She said that the doc told her that since I had never had any reaction to the remicade she didn’t want to give it to me now – particularly since my LFT was high.

It was a Thursday that I had my remicade dose.  I called the clinic to book an appointment with the Internal Medicine doc and got in the following day.  However a few hours later they called back and said that something urgent had come up and had to reschedule to the following week!  I told them I’d call them back once I knew my schedule.

My mind was really spinning.  It sounded really serious – however my doc hadn’t given me the actual lab result numbers (which she never does – I should raise that with her next time I see her – all my other docs give me all my info.).

I looked into side effects of statins and sure enough – a small percent of people can react with raised LFTs – so it seemed like that was the culprit.  At the same time I wondered if something like stevia could raise my LFTs since I used that in my smoothies, for home-made ice cream etc. all the time at home.  I Googled it and all that I found seemed to show that stevia is ok – however in reading about stevia I came across the old arguments about whether the artificial sweeteners are ok or not.  At that same time I got the comment from James.  I went and checked my protein powder right away (Dymatize) and sure enough the ingredients included Acesulfame K.  I also like to chew gum while at the office and found that this also is full of artificial sweetener!

With nothing to lose I decided to go for a month with no acesulfame K, aspartame or splenda to see if it makes a difference.  I ordered some unsweetened pure protein powder for my smoothies.  I’m about 10 days in and to be honest there is no difference in my restless legs.  They are as bad as ever.  I’ll do it for the full month though.  In any case my grandmother also suffered from RLS pretty badly and I’m pretty sure she didn’t consume acesulfame K, aspartame or splenda so I think that the cause is likely to be something else.

Also at the same time I was reading many articles from Life Extension Org about the benefits of Vit D and had decided I needed to recheck my Vit D levels.  So in order to hit all the problems at once I booked a follow-up appointment with the anti-aging specialist – whom I hadn’t seen for 18 months.

So I showed up and had a great talk with my anti-aging specialist.  She printed out all the results of my previous blood tests so I could see what was up, and she showed me that my last LDL was 76!  Wow!  She also noted the conundrum that on one hand perhaps the statins were helping the LDL but on the other hand they were raising my LFTs.  She ordered a range of blood tests and we booked a follow-up a week later once the results were in (since some of the vitamin tests take several days to get the results).  A few hours later I got sent the results of the LFT as that comes back quickly, and I saw that everything was normal except for ALT which was slightly elevated.  A quick Google showed me that having only one of the LFTs elevated isn’t something to get worried about.

Oh, in the meantime I had gone back to taking tramadol for the restless leg pain.  I’m keeping a good record of how frequently it comes and what makes it better / worse.

After a week I went back to see the anti-aging specialist and she confirmed that my LFTs were ok – and that the one elevated result (ALT) did not concern her.  My Vit D levels were 37 – which is normal – and I discussed with her taking more supplementation as I want to get it up to 50 – 60 as there is a lot of evidence showing that this is very beneficial.  She agreed and so I am taking 15K IU for 2 weeks to get levels up and will then take 5K IU daily to keep it at that level (currently I only take 1K IU daily).  I booked a follow up appointment at the end of this month and will  recheck my VIt D, LFTs and LDL.  I’m hoping that both my LFTs and LDL will be ok.  With those two back in control I’ll then be back to the old problem of how to manage the RLS.  In my experience tramadol is the medication that works the best – but due to the prejudices of my docs (i.e. the view that taking an addictive drug long term is bad) I know that they will try for something else.  Something else that doesn’t work as well and has more side effects.  Sigh.


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Stopping Remicade

I can’t recall if I blogged previously about my doctor’s comments about my arthritis possibly being in remission (and I’m too lazy to do a search 🙂 ).  Anyway, I haven’t noticed any flare up in my arthritis for many many months.  I used to get some redness and swelling in one of my finger joints in my right hand about a week or two before my remicade was due, but haven’t had that for a long time.  I also used to get a really really sore back and ribs but haven’t even been too bothered with that either before my remicade.  So it is quite possible that I am in remission – which isn’t unusual for people taking biologics.  The question arises however of whether to stop taking the biologics to see if the arthritis will return.

I have read some testimonies where people who stopped biologics remained arthritis free for a year or two and then it returned, and others where they are still arthritis free.  The problem (which I know I have blogged about before) is that if one stops taking a biologic then usually they can never return to it.  I’m guessing this is something to do with the body recognizing the biologic as an invader the second time and causing a huge allergic type reaction as the immune system tries to buck it.  Or something like that.  So my dilemma is if I try and test the remission theory and I’m wrong or the arthritis returns then I’ll not be able to take remicade for it.

Previously I was not keen to take that risk since I get my remicade paid for by my employer and it works so well.  Also I’m cognizant that there is always the awful paperwork to go through if I did stop biologics and then had to apply to recommence again.  What would happen if they refused to give me a biologic!  That is a scary thought.  However to the plus side there seem to be lots of new biologics coming through so I’m sure I could find just as good a biologic to take as remicade.

Why is my general health so good now (apart from my cholesterol and nagging injuries)?  It may be because I have started replacing my breakfast with a juice drink.  My previous breakfast was in no way unhealthy however I decided to experiment with a juice drink.  I have tried this before but had terrible stomach pains.  I used to blend together a few cupfuls of kale or spinach (whichever I had on hand), protein powder and a spoonful of peanut butter to make it taste better.  It did taste quite ok but I found that it gave me intense stomach pains so I stopped it.  Recently I returned to thinking about the drink (courtesy of a Joe Rogan tweet) and decided to cut out the protein powder thinking that this is the culprit giving the stomach pains (although when I mix protein powder with milk I do not have any stomach pains).  It seems I was right.  Somehow the combination of protein powder with either spinach/kale or peanut butter causes my stomach pains.  I changed to the following – kale/spinach, whole cucumber, carrot, 3 cloves of garlic, 2 teaspoons of powdered ginger – and found that I get no stomach pain.  I need to be clear though – it tastes nasty.  Really really really nasty.  I have to hold my nose when I drink the stuff and I wince and make lots of crazy facial expressions when I drink it such that my kids laugh at me.  I burp up garlic breath for a while too so I have to chew peppermint gum.  But I don’t get any stomach pains.

The result is I have unbelievable energy afterwards and great clarity of thought.  My weight has dropped – however I think that this could easily be from my muscle wasting away since I haven’t been able to train due to my injuries.  Anyway the plan is to keep it up until I get my next LDL check, my thinking being that this healthy drink + the statins should really make it drop.  In the meantime my routine is this wince inducing healthy drink (as well as maintaining my other healthy eating throughout the day) and absolutely blow out once per week on my cheat day (currently Saturday).  It seems to be working well.

By the way, the healthy drink also makes beautiful bowel movements! 🙂


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