Rheumatoid arthritis, pain is back with new symptoms

[cindy19981]

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 raised.

It all started by feeling a sudden strange pain to my right heel, thereafter 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 is fair game and can be "attacked". Sometimes, like right now, I have pain and swelling in both feet in many different areas....

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 continuous scratching. I keep taking Enbrel regularly. 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 and sorry for the long comment.

[Hidden]

This really does sound so bizarre and awful for you Cindy. I have no experience of Enbrel - perhaps others will have experienced something similar but I don't recollect reading of anything like this here.

I did have an incredibly itchy rash that started on the soles of my feet and spread right over my body when I was on Sulfasalazine - along with ear and neck swelling. Needless to say I had to stop taking it but these are listed as common and serious side effects. I was given two different types of antihistamine by my GP - one for day and one for night (drowsy) which got it back down to normal after about ten days.

I have just quit Methotrexate because of a very rare side effect - a taste like sour milk constantly. I had other horrible side effects from it but this was the worst. This is my 3rd DMARD in three years - two I've tried twice, so I do really understand and sympathise about drug intolerance at least. Twitchy

[cindy19981 in reply to Hidden]

I know, it's definitely bizarre and awful. How can you be ok for 3 years and suddenly you are back on pain and with these new weird symptoms? What's even more weird is that if I was on remission from Enbrel you would think I would go back to like I was before...swollen extremely painful knees, leg pain and so on but no, never had these type of problems before.

[Hidden in reply to cindy19981]

These autoimmune diseases are hellishly complex and can change course completely I have learned. Even my RD is completely different now to how it was when I first started it - but not in remission sadly just different. Could be that the disease itself has changed direction for you rather than the Enbrel giving you this problem? A professor of connective tissue diseases explained to me that every patient he sees has their very own brand of autoimmunity. He said if he had time he could almost name each disease after each individual patient because no two people are the same.

Sorry Cindy - this doesn't help you much of course but there are other Biologic drugs that might help you again even if this one has run it's course? Please don't despair - if Enbrel has worked for three years then maybe another one will too.

[cindy19981 in reply to Hidden]

Oh don't worry, I appreciate you taking the time and replying

I believe the professor is right. I wish there was a unique pattern, much easier to find a cure, but unfortunately with autoimmune diseases every person can have their own symptoms differing from others, making it very hard to find an effective solution.

I'm starting to think my RA has mutated and Enbrel doesn't do the job anymore. If nothing else is left, I'm gonna have to try a new Biologic drug yeah which kinda scares the hell out of me because you know, the more recent the drug the less is known. But as long as it works, I'm willing to try anything, in fact, what else can we do, right?

[Hidden in reply to cindy19981]

Yes I agree it is all rather scary. I've been looking through my blood results since my RA started in order to try and work out why this professor was so certain I had autoimmune disease(s) other than by my consistently raised/high ESR and CRP. I just discovered some private lab tests I had done last year where it says my Immunoglobulin A was above normal range. I'd never noticed this one before so I looked it up and it says it's an autoantibody and can be positive in people with RA. Then I looked up Thyroid Peroxidase Antibodies (I was diagnosed with hypothyroidism well over a decade ago) and they were a loud clear positive too. I do wish my own rheumy would explain this sort of thing to me just once so I hadn't spent the last few years wondering if I'd been misdiagnosed! I think I'm only starting to take on board that autoimmunity is this complex and that mine was relatively clear-cut.

There is new research (Arthritis Research) that shows scientists think RA is in fact a syndrome rather than one disease. I sent my GP the link as he's interested in this sort of thing and he emailed back saying that it confirmed his theories and he's sure than in ten years time people with inflammatory diseases will have their own individual taylored drug protocol rather than the one size fits all approach that currently exists.

Re Biologics - I'm pretty sure than there are a few that are well tried and tested now - including Humira and Cimzia. Humira even comes out of it's patent next year I believe. Twitchy

[cindy19981 in reply to Hidden]

Autoimmunity is very complex. Usually when you have RA, your Rheumatoid factor level should be high, mine wasn't. I had ESR higher a few times but the only real sign was having the CRP elevated which is why at first I got told I have no rheumatoid arthritis despite the fact my ankles were swollen, red, hot, filled with fluid, I was in big pain, could barely walk, then it moved to my feet and upper arms and no medicine was working.. it differs from each person which is why it can take a long time before you get the right diagnose and drugs. And if you get both right, there's no guarantee it will be forever because one day you wake up and there's a new mysterious pain.

Do you have autoimmune hypothyroidism? Like Hashimoto's? Could explain your higher level of antibodies since it's another autoimmune disease. Once your body starts attacking you, it doesn't stop.

If I'm not mistaken there are like 8 biologics available as of today and I think Remicade was the first, could be wrong though.

[Hidden in reply to cindy19981]

Well people on the Thyroid UK HU community say that all autoimmune Hypothyroidism is Hashimoto's. But neither of my gps have ever confirmed this so I've just sort of assumed mine must be.

I have re read my rheumy's letter diagnosing me tonight as I'm trying to practice being clear and assertive with him on Friday. I seem to evaporate into an rather annoyingly intense and convoluted blob whenever I'm with him, despite being a reasonably confident and assertive person in all other aspects of my life!

So I'm rehearsing what I'm going to say like an actor learning lines from a script this time in effort to make myself properly understood by him for once.

Re autoimmunity - I still don't really know what this professor meant about it being certainty from my blood results because my rheumatoid factor was only a low positive and my anti CCP was apparently negative - as is my ANA. My own rheumy diagnosed me with sero negative RA and seems quite influenced by these antibodies although he claims they are not really very important. This prof said that if he could determine a rheumatic disease by a person's autoantibodies then he would be out of a job! He usually only takes on the very hard to diagnose patients though.

Meanwhile I seem to have come out in another spate of flat bright red spots again all over my ankles just where I have this strange nerve pain. Oh well at least life with autoimmunity is rarely dull?! Take care Cindy - goodnight. X

[cindy19981 in reply to Hidden]

Hope your friday appointment went all right. I'm a very talkative person but each time I go see my rheumatologist or any other doctor for that matter, I do rehearsals too. Not only I practice what I'm going to say but I'm so afraid I'll forget asking something important, I write down notes, then bring the paper with me and literally take it out in front of the doctor. They always laugh! So don't feel bad, doctors do make you nervous.

I have seronegative RA, too. Been told I'm in fact "lucky" because it if were positive, there's a severe risk of body deformation due to arthritis rheumatoid. Don't know what to think of that, all I know is I'm not fine, again.

My take is nowadays doctors, not all of them of course, put too much importance on blood tests forgetting to look at the general picture, resulting in long diagnoses if the results don't show anything positive or only a very low positive level.

[Hidden in reply to cindy19981]

Cindy I put up a post about my rheumy apt on the main forum yesterday. It went pretty well thanks!

My rheumy said it is important to treat the person not their blood results. He is right if course but he almost didn't see me to diagnose me three years ago because my anti-CCP was negative. I had to shout via my GP and the rheumy physio to say "help - look at my hands and wrists then - never mind the anti CCP!?". So not sure if it is all words but anyway I do agree they need to trust the patient's account first and foremost! Which is ironic from me really as I rarely have visible swelling or feel much pain now but I do feel ill and always know when my inflammatory markers are going to be high! Tx

[Hidden]

I have a bulge on the inside of the left foot and too is very painful,it's ugly as well.I was sent to podiatry for other problems with my feet and mentioned it to her and she said it's inflammation which to be honest I don't agree with as it never goes down.ive had it nearly 2 years.x

[missmopp]

hi suffer bad with my feet , went to see my rheumy . and told me as well as rheumatoid arthritis i a have osteoarthritis . i am in so much pain , he told me not a lot he can do ,

[nomoreheels in reply to missmopp]

Hiya missmopp. I've just been told that my more recent pain is caused by my OA & is trying to help me. If you'd like more info pm me as this is an open thread.

[nellysgran]

Hi like you I was put on Enbrel and noticed a considerable difference within a few days, I almost felt normal again, then out of the blue my left foot started to swell, does this sound familiar ??? now I have 2 swollen feet and a lot of pain sometimes sharp stabbing pains in my ankle by my achillies tendon. I saw my consultant 2 weeks ago and she sent me for an x ray,and she told me to stop the Enbrel, and I have to go back on the 8th August when hopefully I will get the results, and I hope get back on the Enbrel, in the mean time i still have 2 swollen feet especially my left one around my ankle, it makes my foot look deformed !

Hope you can find an answer to this problem, I will let you know what happens at my next meeting .

Wendy x

[cindy19981 in reply to nellysgran]

How long have you been put on Enbrel before the swollen feet? Because if it's after a short amount of time I would say these are side effects.

[nellysgran]

My feet started to swell the week before I started the Enbrel, and are still very swollen.