I have had this worsening over the years and doctors have not wanted to operate on them and now partially blocked arteries prevent it after I did find one so it is being totally ignored The big toes are very bad and becoming quite painful with both feet very stiff and become worse as soon as getting into bed. The discomfort is worse on the right foot with and rather I suppose like restless leg syndrome and pain up into the lower shin. I have never slept all that well but this keeps me very much awake for hours. I have not taken more than paracetamol for it and it no longer works.
What do any other sufferers suggest doing for it and perhaps I need another Forum that you can suggest,
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seasider18
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Are you sure it is arthritis? I myself have Rheumatic Arthritis since I was 33 (am 40 now), but I was very quick to go to a specialist (I easily feel pain) and have had the luck to have come to a very good specialist. Have been on meds every since. First pills and now since almost a year I am on monthly IV's (since the pills didn't work anymore), which helps me to not feel any pain at all anymore. I consider myself very lucky as not much damaged has been done to my body as yet, having been early enough and having a doc who puts me on better / heavier meds when it is needed. My left index finger has been damaged a bit, but at the moment it's only a bit of stiffness in the morning.
Anyhow, if it is arthritis, is kinda sounds like your doc isn't doing enough. Or has not done enough in the past because of which you are now in this situation. Any chance to go to another specialist for a second opinion?
Podiatrist and GP say is arthritis and big toes are becoming more deformed. My GP referred me to a consultant two months ago but no response yet.Which meds are you being prescribed. Many have such side effects that they really concern me.
I first was for several years on Salazopyrine (sulfasalazine), big orange pills. I did have to up the amount per day during the years though. But they did help for about 7 years, though I did have some small flare ups a couple of times a year. They are among the most harmless meds for arthritis.
When 2 years ago a toe and my index finger inflamed heavily and did not show any sign of recovery, my rheumatologist asked me to try Ledertrexate (methotrexate). 6 little pills every week (so once a week). These are already a bit nastier meds, I heard someone claim her mother got cancer because of that. But of course, what to believe, could have been pure coincidence.
After a couple of months it appeared that the combination of sulfasalazine and methotrexate did not help. My toe and finger remained inflamed (could not bend my finger anymore). And then my doc suggest biologicals (still in combination with weekly methotrexate). Here you can only apply for biologicals after having tried 2 regular meds. Biologicals are very expensive (almost 900 euro per month) and for our health insurance to pay this, you have to check some boxes on their list. My doc suggested to try Roactemra (tocilizumab). I have read up online about it and this is again among the most harmless of the biologicals. They even now give this med to Covid patiënts who are doing very very badly.
Anyhow, I could choose between giving myself regular injections or going to the hospital every month for an IV. Kinda being scared of needles, I could not see myself sting myself with a needle, so IV it is for me! So now every month I visit the hospital for about 1 to 1,5 hour of sitting hooked up to the IV. And I have to say, my toe seems to be fully ok now and my finger too except it is still a bit stiff in the mornings, but that's because the joint is harmed. So far since I got it, I have not had any flare ups, so fingers crossed!
As for side effects, I can not say. sulfasalazine did not appear to give me any side effects except for fluo yellow urine (yuck) and as for the methotrexate and the tocilizumab, I honestly have no idea whether I have side effects. I seem to have a runny nose ever since I started with the biologicals, but that can be a coincidence (might as well be an allergy). But I am rinsing (?) my nose now a couple of times a day with a salt water liquid and since I started doing this it seems to become slightly better. And I also have very small bumps (like acne) on my face, but I have always had problems with my face and struggle with cremes and such, so I really can't say whether it became worse due to the biological or not.
In any case, I also of course can't say about long term effects on your body. But please keep in mind that the arthritis ravished your body if it is not under control. Your docs should work to find medication that controls your arthritis and gets you pain-free. Because if not under control, arthritis can attack your organs on long term too! It is very important to get proper treatment. So there might be side effects of the meds, but the arthritis needs to be treated. Of course, joints that are damaged cannot get undamaged (like with my finger). So you can have pain from the damaged joints, but it should not be from the inflammations of arthritis.
If you have any more questions: feel free to ask. I hope I have cleared up some things and wish you all the best!
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