Just a bit about my journey! I was initially diagnosed with ankylosing spondylitis over 15 years ago and was treated for 3 months. The rheumy then did a Gene test and when it came back negative, he changed his diagnosis, got a leaflet on fibromyalgia from the waiting room, threw it at me and said "let's try this instead"! I then spent the next few years suffering with no real support as there was nothing prescribed for fibromyalgia apart from Prozac!
Over the years I suffered things like Uveitis and Palmoplantar pustulosis as well as severe pain and weakness and eventually in 2009 I was rediagnosed with Seronegative Inflammatory Spondyloarthritis. My Rheumy has since said I have PsA...however I am a bit of an enigma as I have never had visibly swollen joints or suffered from Psoriasis! He has also stated that I have secondary fibromyalgia. I was on Sulfasalzine (3000mg) a day from 2009 until recently. I have been particularly bad since November and my ESR, CRP and liver tests have been abnormal since then.
I saw my Rheumy last month and he said the Sulfa is obviously not working and was causing problems with my liver, so he asked me to drop to 500mg of sulfa and I was put on 10mg of Leflunomide. I go to see him again on Friday when he should double the dose to 20mg.
I have been particularly bad with pain and exhaustion since this new regime started as I guess the Leflunomide has not yet kicked in and the Sulfa is doing little...but I have told myself I just need to grit my teeth over these next few weeks until the Leflunomide kicks in properly....it is hard though.
I am prescribed 400mg Tramadol per day if needed, but to be honest they do nothing for me, I am therefore going to ask for a new pain medication....any recommendations?!
I am 46 and have always worked. I had to reduce to part time hours a few years ago but my sickness leave was still quite high due to my meds not working, trying MTX and being ill, trying Hydroxychloroquine and having an allergic reaction etc. ....In June 2013 I was sacked from work after being there 18 years! This was one of my lowest points but I am currently in the process of trying to set up an online Genealogy business!
One of the main things that gets me down about these illnesses is the debilitating exhaustion and the general feeling of being unwell every day....it is so hard to explain to people just how crap you feel!
Sorry I have waffled on! It is somewhat cathartic putting it down in writing! It is just nice to know there are people on here who may understand exactly what I am going through!
I am in Australia, so on at a different time of day to the US folk.
You have definitely come to the right place. I have found these guys the most helpful "go to" people on this subject. They will listen while you get it all off your chest, empathise with you because we all have similar stories, and give you sound science based advise.
Working is very hard. I am still doing full time work and trying to struggle through. I am desk based, but my work requires a lot of walking on a factory floor (in steel cap boots). I am lucky to work for a company that is caring a supportive. My workplace covers a massive area, but my manager is fantastic and often unobtrusively makes things easier for me by planning meetings where I don't have to walk a mile or 2, or allocating me audit targets that are close to my office. I hope that I manage to get some serious pain relief soon for this very reason.
I class my self as a newbie in the learning phase having only been diagnosed for 12 months and currently trying all the drug regimes. Slow steps.
The moderators are great people and I highly recommend you read through some of the discussion topics. I learned so much myself.
I am in Australia, so on at a different time of day to the US folk.
You have definitely come to the right place. I have found these guys the most helpful "go to" people on this subject. They will listen while you get it all off your chest, empathise with you because we all have similar stories, and give you sound science based advise.
Working is very hard. I am still doing full time work and trying to struggle through. I am desk based, but my work requires a lot of walking on a factory floor (in steel cap boots). I am lucky to work for a company that is caring a supportive. My workplace covers a massive area, but my manager is fantastic and often unobtrusively makes things easier for me by planning meetings where I don't have to walk a mile or 2, or allocating me audit targets that are close to my office. I hope that I manage to get some serious pain relief soon for this very reason.
I class my self as a newbie in the learning phase having only been diagnosed for 12 months and currently trying all the drug regimes. Slow steps.
The moderators are great people and I highly recommend you read through some of the discussion topics. I learned so much myself.
Good luck and I hope we see you around. :)
Becstar
G'day Becstar and thank you for your welcome. I am sorry you are a recent newbie to this bloody awful illness and am glad you are finding support on here. I have been reading several topics already, when I am not too tired!!
Welcome, Minx. Quite a history you have there, and to many of us it sounds so familiar. This is a very tricky disease to diagnose, and many of us were blown off or misdiagnosed for years on end. I got to the point where I thought myself to be weak, a whinger, and imagining things. So after years of being treated with a bit of this and a bit of that and lots of “who knows”, when they found erosions in my feet, all the pieces of the puzzle suddenly fell into place. And believe me, knowing what you have makes all the difference: now you can make progress!
I hear you about gritting your teeth until the medications kick in. Have you found The Newbies Guide (green band above) yet? There’s a piece in there called “Please Mind the Gap”. And that’s about where you are!
As for not having psoriasis, there is a small percentage of individuals who do not present with skin symptoms until after the arthritis appears. But it makes me wonder what your palmoplantar stuff was. In retrospect, could that have been palmoplantar psoriasis? Just a thought.
We’re glad you found us, Minx, even if it’s a shame that you have this difficult disease as well. One thing though: no need to smile through it all. This is a great place to vent, with people who truly get it. Hope you find this a good place for support and information!
"Seenie" and "sybil"- would you believe the original Rheumy all those years ago and done all the tests and x rays and said my Sacroiliac joints were bad and I must have had AS for a while. When he changed his diagnosis, he all but treated me like a piece of dirt. I sent a strong letter of complaint to the hospital re his diagnosis etc and had a reply that stated re the xrays that had he looked at them on a different day he may have said differently?!! Anyway, due to his ignorance I was left without treatment for many years.
At one point, I was sent to the hospital where specialists from several departments poked and prodded me for ages....never once spoke to me and walked off without a word! Humiliating experience to say the least!
My turning point was moving and finding a wonderful GP who believed in me! She sent me for every test, scan, x ray known to man! My current Rheumy (i actually see one of two) have been supportive BUT because I do not have the swollen joints etc they will not consider me for Biologics....however, my esr / crp rates have been high for a long time! I have to believe that the Leflunomide will be better than the Sulfasalazine as it is my last hope really!
As for psoriasis and nails. I have a bit of "denting" in my finger nails and my toenails are brittle The palmoplantar pustulosis is also known as pustular psoriarsis. I have no other psoriarsis anywhere.
I am in so much pain at the moment and feeling so ill with it, so looking forward to seeing the specialist friday to hopefully get a different pain med and more leflunomide.
Back on my hobby horse ...... 'swelling' need not amount to much to still be swelling, just a thought! Give yourself a good old prod for any puffiness in places that hurt & think about whether they used to be firm. I guess you do actually have a history of psoriasis. Mild psoriasis can still be linked to PsA. Have you seen a dermatologist?
I wouldn't think of Leflunomide as your last hope, there may be ways around that if needs be but I hope it does help considerably. So glad your GP is great & your rheumy supportive, that makes a big difference.
I have no history of psoriasis anywhere. Never suffered from it. I am again one of the few who gets the arthritis without the psoriasis....which in my case is a blessing as I feel for those of you who suffer from both.
As for puffiness...I am rather a rubenesque lady! Although I have made an effort and lost 20lbs in the last few weeks, so puffiness is hard to tell! However, I have pain in shoulder, both hips, back, neck,wrists, fingers, knees, one toe and the top of one foot! I also, strangely, have heberden nodules on two of my middle knuckes.....these are very painful...again been told I am an enigma as not usual to have them if you have not got RA and also they should not be painful!
Minx, then you do have psoriasis. Psoriasis can take many forms, from barely perceptible nail pitting to plaques all over the body. I had barely noticeable nail pitting and lifting (which wasn’t identified by my GP as PsO), and a history of what I realized after the fact was something called inverse psoriasis where the sun don’t shine. But plaques, no, never. And severity of psoriasis does not correlate at all with severity of arthritis. You can have a very mild case of one and a raging severe case of the other.
Maybe it’s time to start thinking about getting a second opinion. You may not feel you’re to that point yet, but it will likely take you a while to get through the wait list where you live. As for being ineligible for biologics because you don’t have enough swollen joints … well, I was told the same, and that my disease was mild. The trouble is that some rheumatologists use the fingers and toes pretty much exclusively as their gauge for joint inflammation. When I went for a second opinion (with a much more thorough and specialized specialist) it was a different story. Although I did have a few finger and toe joints that were inflamed, the real story was that I had joint inflammation in each of the five joints of my mid-foot (there’s 10 right there), plus both hip joints. And that was without even considering the two knees that had already been replaced. While rheumatologist #1 said that my disease was mild and that I didn’t qualify for biologics, the next tier of specialists said that my disease was severe and that I had no option left EXCEPT biologics. So you see …
Now there, aren’t you glad that you have something that’s so … so … interesting? LOL
There was plenty of pain and x-rays showed damage. I also have a high pain threshold, so some joints that were inflamed didn’t register as tender, and must have been missed by the first rheumatologist. I had everything else as well – generalized aching, crushing fatigue, and bigtime depression. I am on Enbrel, with excellent results.
It’s frustrating how fibromyalgia patients are treated.
Since you have secondary fibro, and that can cause a good deal of pain on it’s own, you might want to ask for something like gabapentin or Lyrica to treat that? I found that my pain got much better after we added Lyrica. You should also be taking an NSAID of some sort to help with inflammation. I know you have different names for them over there, so I’ll just let you look them up.
I agree with everyone else, pustular Psoriasis is still psoriasis. It doesn’t matter how much P you have, there’s no correlation between that and how bad your PsA is. It shouldn’t keep you from biologic meds. You might try seeing a dermatologist. They are much more free with giving out biologics, and you could end up with a prescription much sooner.
I wish you luck with everything, and if you have any questions, please ask.
Minx - just quickly. my Rheumy does ultrasound of all my foot and hand joints. He compares readings and measurements of inflammation in specific joints to see how I am travelling. So it is possible to get scientific analysis rather than just going on your pain levels
Visual, and even scan (MRI etc) assessments are often useful, but not infallible. As are ESR and CRP.
I think that your instinct to look for better medication and treatment options, given your description of how you are declining with your new medication mix, is a great instinct to follow.
Hi Minx! Glad you found this support group, too. Sorry to hear of your bad experiences with doctors. I've noticed a lot of doctors seem to have the attitude if they aren't capable of diagnosing something, they like to make the patient feel like a whiner, or having imaginary pain! Also, others, like family and coworkers just don't seem to understand-and they seem pretty disinterested most of the time. Through all my back pain lately, I swear my boss still thinks I was fibbing about the pain to get out of working move in weekend at our university! She told me today, maybe the weather has a lot to do with your backache. Ah, excuse me, I know weather can affect arthritis a bit, but you see, I couldn't move for 4 days--I highly doubt weather could cause that much pain. Grrrrr, anyway, glad you found us--we all can give each other the support, encouragement and sometimes sympathy (at least I feel it in my heart when people like you tell of their horror stories with the disease). :-(
Hi everyone. Thank you so much for all your replies and kind words.
Well I went to see the specialist on Friday and had a bit of a melt down! I told her how ill I had been feeling and how much more pain I was in, so she told me I needed to stop taking the Leflunomide....at which point I burst in to tears! I asked her what she intended to do...leave me with nothing but 500mg of sulfasalazine? She said there was other medication, but I pointed out I would have to start from scratch again with a new drug and at this point I would rather persevere with the Leflunomide for another 4 weeks to see if the feeling ill went away. She agreed to this but said she was not prepared to put me up to 20mg a day until she was satisfied it was not making me ill!
Once again she asked if any of my joints were swollen, at which point I got quite angry and pointed out that in all the years that I have had this, I have NEVER had visibly swollen joints and also, apart from palmoplantar psoriasis I had never suffered from psoriasis....however, my ESR and CRP are once again high (for me) and have been for months and asked her to explain that....she said "well you could have an infection"!!
Anyway, she agreed to give me a steroid shot and, because Tramadol has not been working for me, has prescribed me weekly Morphine patches. She has also given me anti-nausea tablets.
I am to go and see the specialist nurse in a month to see how I am getting on and, if the leflunomide is still making me feel crappy she said there were other medications they could look at.
I left the hospital feeling very down, but after a few hours of sticking my head up my bum I am gritting my teeth and getting on with it again!!
I am just so fed up after all these years that I have been unable to have more than one day of feeling "normal" but I guess that goes with the territory of these bloody illnesses!
