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Rheumatoid Arthritis, new symptoms, I'm lost

Posted , 3 users are following.

cindy58195
cindy58195

Hello.

I've been suffering from rheumatoid arthritis since 2006, after a long ordeal through doctors, drugs without any effect such as Cortisone, Chloroquine and Arava or too many side effects like Methotrexate plus strong pain that lead me to pass a long time stuck in bed, finally in 2011, I was given the green light to try the new biological treatment Enbrel (Etanercept) 25 mg two times a week. The positive effects were almost immediate. I now take the new dose, Enbrel 50 mg, once a week.

Until 3 months ago I can say I was almost back on track with my life as I was before becoming ill, but then, out of nowhere, new problems arised.

It all started by feeling a sudden strange pain to my right heel, therafter it was followed by strong itching, like that wasn’t enough, the aching part swelled, became red and a round “bulge” (lump) appeared which made the simple act of putting the foot on the floor extremely painful. Then after a couple of days the pain/itching/swelling moved to my left feet, specifically between toes. Then it moved to the upper side of the foot and after 3/4 days it moved to the sole of the right foot. And it’s been like that since today. This situation lasts for a couple of days, then it moves from one part of the left foot ( be it the heel or upper side/sole/lateral part of the foot or between toes) to the right one, or vice-versa. To put it simply, any part of the foot it's fair game and can be "attacked".

I tried cortisonic therapy (Prednisone) for two months but without any positive outcome, then I moved onto Aceclofenac tablets, again, no results, and now I’m on Diclofenac (Voltaren) 50 mg. It’s the only drug that temporally ease the pain and the swelling, but obviously it’s not a definite solution. For the itching I take Claritin, an allergy medicine, which seems to have toned down my continous scratching. I keep taking Enbrel regurarly. It had happened I had a break from pain for a short period, but after two/three days it’s back to square one.

My rheumatologist made me take a series of blood tests such as blood count (hemochrome), white blood cell count (WBC count), uric acid, calcium, Parathyroid hormone (PTH), Rheumatoid factor (RF), erythrocyte sedimentation rate (ESR), C-reactive Protein (CRP), IgG and IgM antibodies, antinuclear antibodies (ANA), Anti-neutrophil cytoplasm antibodies (ANCA, specifically c-Anca/PR3, p-ANCA/MPO) and a complete urine analysis. All results came back negative with the exception of CRP, which is a little bit higher than it should be, 0,65 mg/dL while it’s supposed to stay under 0,50 mg/dL.

I would like to know if anyone is experiencing or had experienced the same as me. My rheumatologist is surprised and to be honest, a tad clueless for the first time me because until 3 months ago everything was going great and these new weird symptoms came out of the blue. Frankly to speak, I’m desperate. All opinions are more than welcomed. Thank you.

0 likes, 15 replies

15 Replies

  • CA-Lynn
    CA-Lynn cindy58195

    Posted

    Have you seen an orthopedic surgeon?

    Do you take a statin by any chance?

    I'm wondering if one of the drugs you take [not Enbrel] is causing the tendonitis.

    • cindy58195
      cindy58195 CA-Lynn

      Posted

      No I haven't seen an orthopedic surgeon nor do I take Statin. The only drug I took before these new symptoms was Enbrel, nothing else. Not even an Aspirin because I was doing good..
    • CA-Lynn
      CA-Lynn cindy58195

      Posted

      But you took Cortisone, Chloroquine and Arava before Enbrel, right?  How long before you finished cortisone and started Enbrel?

      I'm wondering if the tapering off the cortisone caused this. [I'm not a fan of systemic cortisone because the "rebound" can be significant.] Some patients are very sensitive to the tapering of prednisone which may be done slowly over a few weeks.

    • cindy58195
      cindy58195 CA-Lynn

      Posted

      Right, all those medicines were taken before Enbrel. I took Cortisone for about two years and a half, then I had to slowly reduce the dose until I was off Cortisone, I'm not sure, I think the tapering off was like 3 weeks/a month. Afterwards I started taking Enbrel so yeah there wasn't a real gap between me ending Cortisone and starting Enbrel. 

      But I started taking Enbrel in 2011 and for almost 3 years had none of these new symptoms. I'm no expert of course but shouldn't any side effects from slowing down Cortisone show up in a more shorter time?

    • CA-Lynn
      CA-Lynn cindy58195

      Posted

      I'm not really clear as to how many days/weeks between end of Cortisone and beginning of Enbrel. Since Cortisone [depending on which kind] can stay in your system for a while, it's possible after the Cortisone finally  cleared the system your body reacted. Again.....hard to tell.

      I only know that on the rare occasions I've had to take a Pred pack, a few weeks after I've stopped the pills my bound rebounds terribly. [Which is why I avoid systemic Pred like the plague.]

    • cindy58195
      cindy58195 CA-Lynn

      Posted

      I don't recall the exact number of days, but just a few before I ended Cortisone and started Enbrel. I obviously tappered off Cortisone as I was told by my rheumatologist, something like a month, it wasn't like a stopped taking my daily Cortisone's dose and then switched to biologic. 
  • nanaally
    nanaally cindy58195

    Posted

    Hi Cindy I've had rheumatoid arthritis for 16 yrs now . and I've tried a lot of medication. I am now taking enbrel and have done for 4yrs . at first it was great but like most of the meds I've been on . they have started to have no effect or very little in stopping the flare ups . I am on large doses of prednisole as well as taking lefludimide. .. My artiritis got that bad that it affected my heart it became enlarged.so that effecet the aorta which give me an anyerism which was very dangerous . I had to go to hospital for three days and have the equvilant to 52 injections of streriod  put into me by I.V.... . at that time I was on humira so that had to stop .. But like I said I'm now taking enbrel and steroids and lefudmide.. The steriods I have to take long term ... But I've have had the swellings in my feet and when they've been scanned there is nodules that have wrapped around  the nerves in my toes . I've had one removed but the surgeon had to remove the nerve as well . but then it grow back . so they said they won't remove any.more . .But when I first started with my feet they used to be swollen or areas that where swollen and then I thought I had the feeling of having a stone in my shoe.that was irritating my foot . over time may be 6months it started to a

    ffect my walking and there was a lot of pain 

    .There still is ... Have your feet been scanned Cindy just in case you have some nodules developing in your feet ..

    • cindy58195
      cindy58195 nanaally

      Posted

      Hi! So sorry to hear you went through so much.. aneurysm.. 52 injections... boy that's scary.. and I don't know you but I hate taking Cortisone.. at first I was able to tollerate it quite well but with time going now it's quite painful.. my face swollens.. general sickness... the less. the better.

      Rheumatoid arthritis is a giant pain in the ass, the moment you feel like you are back on track this autoimmune disease breaks you again! I believe it's because drugs only soothe the symptoms but it's not a definitive cure. I wonder if we'll ever have one...

      I haven't been scanned, no x-RAY or ultrasound.. I asked my rheumatologist twice but he said it's not needed because blood tests tell you everything you need to know, and then tried with my doctor but got pretty much the same response. I'm considering doing it on my own, just to be sure there aren't like you said nodules in the feet or something else.

    • nanaally
      nanaally cindy58195

      Posted

      Hi Cindy I'm glad that you read my post . if I was you I would insist on scans the trouble with rheumatologists is they might know about the disease but we are the experts because we are the ones with it . over the years I've had it I've had 4different rheumatology doctors only because they left to go to other hospitals. ..They are all.keen to please when new but they soon become familiar in there surroundings . so we then get looked at as a number ... You need to be polite but firm and insist on some scans.  .... X
    • cindy58195
      cindy58195 nanaally

      Posted

      Doctors are very complicated human beings hehe. I'm always polite, more so when I try to get them to prescribe me a specific visit but sometimes is to no avail because they are very firm and stuck to their decisions. I know they studied hard and have a lot of experience but like you said, we are the ones with sick bodies and know them the best. My family doctor trust my rheumatolgist so if the latter says something, it's his words over mine. I'll try again. I'm not saying an X-ray is nothing but still less dangerous and less side effects than taking painkillers/anti-inflammatories for months with no result. See, when it comes to drugs, there's no problem in getting a tons..
    • nanaally
      nanaally cindy58195

      Posted

      Hi Cindy . its a scan that u need not an xray. the scan is like the one u have when pregnant. They check thoroughly  in all the folds of your foot . maybes if u tell them that u feel like when your walking it feels lumpy and painfully .as if u have stone in your shoe. That's how I got the scan . when they done the scan I had 2 in left foot that was20cm and the other was 16cm they took the biggest out. That has come back not as big yet . and the right foot had 3 all no bigger than 9cm . as I said before they won't operate no more. Because they are reacaring . but my feet burn and swell and my mobility becomes a shuffle . the swelling and pain can last as long as a few weeks or a couple of days ..... Hope you get some results with your consultant x
    • cindy58195
      cindy58195 nanaally

      Posted

      Hello. Scan as in ultrasound? I booked an appointment today, privately. Because my rheum is on vacation and won't be back before late august and I can't wait that long, plus, as I said, he made it very clear I don't need it and I told him all the symptoms I feel. Basically, I'm doing it for my own reassureance. I'm not trying to play doctor but sometimes you gotta do what you feel.
    • nanaally
      nanaally cindy58195

      Posted

      Hi Cindy . glad you booked a scan at least you will find out if it is nodules . let me know how you get on ...  In the meantime take care x

    • cindy58195
      cindy58195 nanaally

      Posted

      I'm glad too because I feel like I'm in a limbo right now, no answers, no diagnose...makes me stressful. You take care too, wishing you to feel better soon and I'll let you know! 
  • debbiecakes
    debbiecakes cindy58195

    Posted

    I know it's been a long time ago, but did u find out what was causes these problems? I have RA also and have the same symptoms! Please help me! My RA Doctor isn't any help so far! My feet itch so bad and hurt to walk on! Thank you
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