Update and side effects

Well its the time of year that sees me more indoors, even though my diary is still full of work. I can handle the cold and some wind, but I cannot seem to tolerate the rain.

I got really soaked right through last week and was outside for 4 hours. My raincoat let the water through. I must have used the wrong washing powder and it took off the waterproof protective coating. That I did not catch a cold was a miracle.

My GP is probably going to be very upset with me but I have taken myself off my meds completely a good month ago. I could not handle the problems with my hands and arms anymore. Plus the morning stiffness and taking forever to get going. I was also worried that my kidneys were not working well as I hardly needed to go to the loo even though I drank more fluids.

So I was thinking about other peoples experiences on this forum and did a cold turkey, no more Ibuprofen, Amitriptyline and Pregabalin. And you know what? My symptoms have reduced drastically. Hardly any more excruciating pains in my arms. My hands are not as tingly and sensitive as before. I stopped dropping things all the time. However my Carpal Tunnel symptoms are still the same. I am having the Carpal Tunnel test mid November. I did not want any drugs to screw up the test outcome. I feel less stiff in the mornings, I can now get up at 7am and be out the door by 8.30am. Which with winter and the clocks change reduces my hours being able to work outside.

Today and tomorrow the weather is quite nice, but I just cannot be asked to go outside, even though I should be earning some dosh to tide me over the lean season. I have been working too hard and feel that my body needs a rest, even though the weather forecast for next week is atrocious and I will be stuck inside.

As I have arthritis in my neck I do feel it impacting me at times and I can also feel my shoulders being a bit more still. I feel the need to go to the loo naturally as well now. I still have the same issues when reading a book or ipad. The hands start to tingle and get painful, so have to change positions when sitting quite often or just sit differently all the time. I have also lost a lot of strength in my hands. Struggling to open bottles, jars and tins on the ring pull, so have bought a ring pull lever. But its not as bad as when on the meds. So all in all I feel quite good within reason of course.

I have started to get my art and crafts kits out to keep those fingers nimble over the winter. Also to get some crafting in before I have the Carpal tunnel operations on my hands.

The thumb on my right hand is quite sore. Its swollen up and won't bend much. It hurts quite bad if it gets knocked. I banged it against a bag of shredded bark the other day. It felt like I hit my funny bone. I nearly cried of pain. The round bone where the thumb is attached to the hand seems swollen and painful to pressure. This has not changed since off the meds.

I am taking more Vitamin B's though and Vit E and a couple of different multi vitamins and Magnesium. I was struggling to find the right tablets not coated or filled with excessive colouring and artificial sweeteners as those make me break out big time. Boots and Holland & Barrett had some. But the sizes of some of the tablets are so huge. I struggle with big tablets.

The other issue was my eyesight. It really changed negatively when on the meds. Its a lot better now but still not as good as before, so will most likely need new specs.

A new thing which is starting up is this sensitivity of the skin. I feel itchy wherever the skin gets exposed to cooler air. So when I change from day clothes into evening clothes my skin starts to itch and I have to scratch. When I had a shower and come out and dry off I itch all over. This stops after a while when I get dressed and wrapped up warm. This is really weird and just another RA symptom I guess I currently have to live with I guess.

So thats all really. Just waiting to get the nerve conduction test done now to plan the next steps of this saga.

15 Replies

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  • Wow Breadfruit that's a lot going on.... It'll take my foggy brain a while to assimilate it all LOL.

    My immediate thought is brave to go cold turkey and then a part of me wonders if it's wise but that's my current stuff probably.

    Have you added turmeric, ginger and/or cinnamon in to your diet as they have anti inflammatory properties and may help to keep things going well for you. I have fresh ginger root which I cut up and add to things like yoghurt and cereals and when out if I have a coffee (flat white for me please!!!) I put cinnamon on top instead of the chocolate offered. I still get a little swelling and pain in my hands but am only 9 weeks into treatment after diagnosis and thus only some 4-5 weeks into applying anti inflammatory diet changes that may help (I'm on 15my of MTX and naproxen 500 X 2 a day the later I'll admit I've forgotten one or two evenings as I do not have much or any pain sometimes).

    As for the coat... mine did the same today when I was out for a walk but my partner has lossed so much weight that I've inherited a new one so no reproving for me - Phew!!!

    Good luck with it all and keep us posted as to how it all goes.

    All the best

    Ali

  • I try to eat quite healthy. But I hate ginger, especially when in raw or concentrated form. I have cut out a lot of junk food, i.e. biscuits, sweets, chocolate, ice cream, yogurts that are too loaded with sugar, cookies, white bread, cakes, pies... I stopped baking cakes every weekend. I dropped dress size this summer (April to October) from a 16 to a 12 now. I lost a lot of weight, which is good for the old knees as they are creaking badly.

    I also eat a lot of porridge, about 6 times a week. The organic unprocessed type. I also eat a lot of bananas because I like them so much. But like you I need my coffee every morning. I am addicted to coffee.

    I read the side effects leaflet for the tablets and I just wanted to see if the pains in my arms and hands come from the tablets. It seems that partially they have caused my severe discomfort.

    But I do have to learn to take it more easy and to refuse the really hard jobs.

    Is there a book out there that gives recipes for an anti inflammatory diet?

  • Hiya Breadfruit. My first thoughts were to give my experience but as they're not a good comparison in either meds or condition thought better of it. What I thought was maybe better was to say it's not for us to endorse or condone stopping meds without the advice of the prescriber but do feel that maybe the problems you were experiencing my h had .... & far worse due to pregabalin. He sought out the help of his GP to question them & although it can be a good med for some the side effects were worse than the benefits for him, in fact there were no benefits! What he had to do though was taper off it & if you Google pregabalin it's well documented & also the side effects.

    I don't take vits other than prescribed Adcal-D3 & folic acid but I do supplement with cod liver oil but that's because I go with my Rheumy & GP's recommendations & get my vits the natural way through diet that way I'm sure I'm not upsetting the apple cart with my meds. It really all depends on what you need to control whichever condition you have I suppose.

    I hope the nerve conduction test proves conclusive for both & you have your op/s. I recovered pretty quickly from mine but do ensure you do the exercises given to you as soon as you're recommended to, it makes a world of difference in getting full use back speedily.

  • Yeah I read about the side effects and coming off the tablets. But I was on the lowest dose. I had no issues coming off. I just feel better within reason.

  • Depending on the length of time I believe even as low a dose as 25mg should be tapered, but really your GP should have explained that when he first prescribed them. This is why my h had such trouble as he saw a locum about his pretty alarming side effects & he just took him off them, which certainly wasn't the correct thing to have done. Fortunately our own GP had returned when he was at his worst so she reinstated them in order for him to safely reduce the dose over a month rather than the recommended week to avoid further issues. This is one reason why I never make any decisions before consulting whoever prescribed my meds, that & my own experience of not having my mix for 3 months. I know from that horrendous experience I can't function without mine!

  • Its amazing the different info doctors give. Mine said because the dose is so low there should be no side effects coming off them right away if I were to come off them. I had no side effects as far as I could tell. The benefits coming off have outweighed the side effects of the drugs.

  • Indeed! Although had she checked he Professional Important Safety Information notes she contradicts herself.

    "Withdraw Lyrica gradually over a minimum of 1 week. Discontinue Lyrica immediately in patients with symptoms of hypersensitivity or angiodema.

    The PIL states

    "If you stop taking Lyrica

    Do not stop taking Lyrica unless you doctor tells you to. If your treatment is stopped if should be done gradually over a minimum of 1 week."

    Nowhere does it state dose or length of treatment.

    I think if you were to check the side effects many appear to be ones you listed in your OP.

  • Exactly thats why I stopped them. And both the Lyrica and the Amitriptyline have very similar side effects and in my case must have amplified themselves. I was ready to chop off my arms and had other negative thoughts. The pain was just too bad all day and night long.

  • Sorry, understood your previous answer to mean you had no side effects as far as you could tell. I'm sorry you had so much pain. As I said it wasn't my experience but I was a witness of them & fully appreciate how they can change a person's personality. I do have experience of amitriptyline as I take it nightly & it has really helped my cervicogenic headaches caused by cervical spondylosis/OA without side effects thankfully.

    When all's said & done we have to trust our doctors but I would request clarification if a PIL opposed her directions & I suppose our experience has encouraged me to always read PILs thoroughly before taking a new med, even though we're advised to do so!

  • Totally agree with you. I sometimes feel we are the guinea pigs of the big pharmaceuticals. Everyone is shoved in the same box, but we are all individuals.

  • This is why when a new drug is formulated animal & human trials need to be conducted over many years & more still before being licenced! Yet, of course they can't test it on everyone who's ever likely to need it. But the prescribers must refer to the safety information & inform the patient as necessary as well as the patient reading the PIL, as recommended. I've just had an increase in BuTrans & even though I've been sticking them on for 3 months now as she's been titrating the dose my GP explained what I should do if I felt it was too much & experienced side effects......again! That said I'd rather she did that than just left me to it though, every time.

  • There is a site called Dr Weil's and he has an anti inflammatory food pyramid on it that I find helpful but I check his info out else where when I can and as for the other stuff it seems to be another 'hard sale'. So I refer to the pyramid which is on my fridge at present... If nothing else it reminds me to eat loads of fruit and veg.

    Ali

  • Thanks Ali. I will check this Dr Weil out.

  • OK, looking at that food pyramid I need to do a lot better. Going to print it out as well and stick it on my fridge as well.

  • That is exactly what I did and if nothing else it serves as a visual reminder about eating more fruit and veg.

    Good luck

    Ali

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