I've not been here for a long time. I do drop in occasionally but rarely post as I'm too busy reading other people's stories and learning from their valuable (and painful) experience. But for those of you who remember me, I thought I'd do a brief update on what's been happening. It's been a pretty rocky road and I'm hoping what I've gone through may help others identify problems with their medications / treatment / rheumies earlier than I did. Please note that my experience isn't the norm, but if it helps someone else get better treatment it's worth the aching fingers/wrists of typing all this up!

To summarise, I was diagnosed in 2009 after 10 year history of 'generic arthritis of the knees' (don't ask) which popped up every now and then. From 2005 onwards I had a variety of ailments including plantar fasciitis, 'shoulder impingements', 'dislocated toes' / 'gout', what felt like broken fingers and thumbs. It culminated in the excessive swellng and permanent disfigurement of my left middle finger in 2009 which was diagnosed by a locum as an infection, and, "...definitely not rheumatoid arthritis. I should know, I'm a joint surgeon in my day job." (*facepalm*). Various theories have been bandied about as I'm RF- and present 'out of pattern' symptoms and history. I've been diagnosed with seronegative inflammatory arthritis but I don't fit or follow the pattern for any of those subtypes either. Oy. *shrug*

These are my experiences to date:-

* Sulfasalazine gave me a horrendous allergic reaction resulting in an all-over body rash, severe gum and mouth ulcers, skin blisters, diarrhoea, vomiting, nausea and dramatic weight loss which required an out of hours visit to A&E and culminated in tests for liver and kidney damage and internal bleeding. It also triggered Rosacea, which I still have, together with ongoing stomach and water retention problems. I now have to wear a medical bracelet to warn of my allergy to sulfa drugs and I seem to have allergies to an increasing number of foodstuffs and cosmetics.
* Methotrexate made my hair fall out, gave me diarrhoea and weight loss. I was taken off it after a dramatic toxic reaction. It also didn't work.
* Plaquenil - see Sulfasalazine, only it took 2 weeks to get the same reaction as opposed to 6 months.
* Leflunomide - worked a treat except I lost the feeling in my lower extremeties, and from the elbow to the fingertips. Nerve conduction tests showed no permanent damage but I now have Raynaud's which is suspected to be linked.
* Humira. My wonder drug. Worked within hours. Unfortunately, the steroids I was taking masked the allergic response and after ten days I was back to beans on toast for skin. For the rest, see Sulfasalazine.
* Enbrel. Vicious injection site reactions - hot, red and sore. Initially it took 3-4 weeks for each injection site to calm down and then by my 3rd month I got no reaction at all. When the drug started to work it was excellent and my quality of life was dramatically improved. I was the healthiest I'd been in years. Unfortunately I'd also started to put a lot of weight on, have vicious night and day sweats (I would drench the bed, my nightclothes, my pillow and my husband couldn't bear to lie next to me I was so hot) and my periods stopped. It also exacerbated my rosacea and I suffer from that more than I don't. Things got worse to the point that my internal temperature control went completely haywire and I was sent home from work due to overheating. I had insomnia, terrible headaches and worst case scenario menopause symptoms (racked up to 11+). Cue a lot of research, a lot of arguing with my medical team and my refusal to take it any more, backed up by the Registrar. Also cue a load of tests which showed I was post-menopausal!

At the time of writing it's been a rollercoaster. Nobody believed my claim that Enbrel had caused premature / temporary menopause, or ovarian failure. My cycle had been perfect, textbook until Enbrel. I'm now getting back to normal cycle wise, but it's now 6 months after my first hormone tests and tests still show post-menopause, so obviously something is very messed up somewhere. Even my consultant is confused and has referred me to an endocrinologist. It appears I've gone through the entire menopause in less than three months, yet I've resumed a normal cycle.

Back in August I asked for occupational therapy for my wrists/hands and physiotherapy for my back as none had been offered. Every two months from then on I chased it up to be told it was 'in progress' and the nurse would 'look into it'. Eventually, in January, I asked my GP to refer me to a local hydrotherapy unit and got BUPA to pay for some private physio sessions. The week I completed the private sessions I got an invite from the physio team at my hospital and was advised they'd never, ever received a referral from my rheumy team. I made an appointment with my rheumy and gave him both barrels, the result of which is that I now have an occupational therapy clinic, almost a year after I'd requested it, and continuing physio and acupuncture for my back which, until my formal complaint, had been brushed aside as nothing to do with my condition (even though everything I've read states back/sacroiliac involvement is a symptom of seronegative activity FFS!!!). I'm having an MRI scan in a few weeks to see exactly what's going on in there, which is what I asked for this time last year when I was in screaming agony with it. That MRI should have been done when I first presented, and my fear now is that the MRI will show there's nothing wrong (seeing as I've been having months of physio now).

As a result of all this I've got some bad and very random allergies, rosacea, hormone problems, raynaud's syndrome, dropped metatarsals and a range of other health conditions I never had before I was guinea-pigged and brushed aside / ignored. I'm having treatment for issues that I don't suffer from any more due to the time elapsed, and I'm not having treatment for issues which have appeared recently. I can't get the weight off, I'm still having problems with severe water retention and weight variation. I get recurrent mouth ulcers, gum problems and cold sores. My teeth are cracking and breaking regularly. I have digestive problems I never had before. I'm fighting with my GP to get a referral to an allergist and dermatologist and will have to go the private route. I'm sick more than I'm not and I'm trying to hold down a job where one of the Directors is less than sympathetic, to put it mildly. I've already had to threaten them with the DDA and Equality Act and the witch is breathing down my back every chance she gets.

Don't go through what I did. If you think something is wrong, question it. If you think your treatment is no good, challenge it. If you think you should be having investigations you aren't, demand them. I'm not a wallflower by any means, and my job is to challenge and ask questions and be a damn nuisance, but when you're ill and confused it's difficult to know what to do, so you put your faith in those that are supposed to care for you and then later you find they've only done perhaps 20% of what they should have done. Although my initial experiences in 2009 / 10 were very good I'm finding standards are slipping very badly and he who shouts loudest gets the best service. So please, make a noise otherwise you'll be shoved behind those that do.

For the foressable future I'll be staying the hell away from drugs and going the lifestyle/diet/vitamine regime way for as long as I can. At least this way I know what I'm dealing with.

Marhaid. It sounds like you've been through hell with all the treatment failures and bad reactions to the drugs. I'm so sorry for you. It does seem that some people are quite unlucky in having sensitive constitutions and they tend to have issues with side effects. I have a friend in Australia with RA and she is pretty much in the same position as you. I just wanted to say two things. Firstly I hope you can find a drug that is tolerable and works. I honestly think you are risking joint damage and disability by abandoning dmards altogether. I know it's hard when you have severe side effects ad the frustration can drive you barmy. I had bad reactions to both Mtx tablets and Leflunomide and I was beginning to despair. I'm sure there will be something else that will suit you and it's up to your rheumatologist to solve the puzzle and find the right one for you. Secondly, I'm wondering if the Raynaud's is part of your autoimmune illness rather than a reaction to the drugs. I have Raynaud's too. I suddenly got it last year during my explosive onset flare of RA. I hope you have managed to get it under control. I have now but mine was severe for a while and I ended up with 3 finger ulcers. If you ever want any tips on treating or preventing the Raynaud's then just ask as I've read up on it a lot. I wish you luck and my very best wishes. Naomi.

Hi ya

Been there with the trouble on the meds, although been through a few more than you- none of its fun.
I know the rheumies never ever like to say its their drugs making you sicker, never.

There are lots of other options and like you, I get brave sometimes and think- no meds for me! But I wouldn't go down the diet route- just do healthy living. If you need a stab of steroids from time to time while waiting to decide on the next med option then do it.

Much love

Jenni xx

Hi Mairead

I remember you posting in the early days as I too went was dx in 2009, am I right in saying you were involved in a travelling theatre ? ( or something like that ) I know it sounded very interesting.

You certainly have suffered very badly from all the terrible side effects of the drugs you have taken. Mine compared to you are quite mild although I did have horrendous sweating with leflunomide ( didn t work ) and infliximab caused severe itchy rash which sort of turned into, I can only describe as painful spots, won t elaborate too much, weren t very nice. However, ( the good news ) I am now on Cimzia and touching wood have really no side effects at all, so it could just be bad luck you have had such an horrendous time to date. I totally agree with Jenni that you need to consider some new medication, you don t want the disease to get out of control really although I can understand why you ve had enough of the drugs, who wouldn t feel like this after all you have gone through.

Hoping that things do improve for you soon, and keep posting if you can.

Julia xx

Thanks for all the wonderful and very helpful comments. The diet went out the window! I love pulses but they put weight on me (I do best on a veggie low carb / wholemeal / wholefood diet). I couldn't give up the cheese as that cuts out a huge proportion of my diet. Ah well, I gave it a try.

I've spent a lot of the last week trying to figure out what the heck I have. My rheumy has been pestering me for any family history of psiorasis and constantly asks psiorasitic arthritis questions. I also think he's been treating me for that too, even though the only symptoms in line with a psioratic arthritis consideration are the sausage finger and plantar fasciitis. There's no history of psiorasis in the family, in the 10 years since this nonsense started in my knees I've not developed any plaques or any skin problems other than this ratted rosacea, caused by the Lef/Enbrel.

The only pattern I seem to fit is Undifferentiated Spondyloarthropathy, or Undifferentiated Connective Tissue Disease (there seems to be some confusion over the terminology). This is where some of the symptoms of one or a number of diseases are present, but not enough to fulfil the criteria for any one disease. There's also a trend of thought (in America at least) that UCTD is in fact a unique condition in itself, but no research has been undertaken to confirm this.

If this is the case, and I certainly seem to fit *this* pattern, I have a 20% chance of getting a lot worse, a 30% chance of developing a recognised disease (eg psioratic arthritis, ankylosing spondylitis etc) or connective tissue disease (RA, lupus etc) and a 50% chance of a lifetime of mild disease, or pattern of flareup and remission with the possibility of permanent remission.

It really is a case of wait and see, but I wish I could have been told this instead of NICE guidelines being followed and having all these toxins thrown at me. Had my consultant exercised a little caution instead of just throwing drugs at me, and implementing the same aggressive therapy used for more serious disease activity, my experience might have been quite different. I would have preferred a wait and see treatment to include steroids (which work tremendously well for me) and investigation/monitoring than a one size fits all plan. I would have preferred to have been given a choice instead of thinking drugs were the only option. Assumptions have been made by his team that I'll develop in a particular way. I haven't, yet nobody seems to have grasped this and taken a different course of action. I still don't even know if I have any joint / tissue damage or not. I have no idea what's going on in my body, and nobody seems to be in any hurry to find out on my behalf.

Rant over!

Hello Mairead,

I've been wondering how you've been getting on? I read your post with interest because I was going through a discussion about under and over treatment with my consultant at the time. At the moment we've decided to go down a wait and see route on the basis that he's "seen too many people die of the drugs needlessly" So I'm banking on the next lot of x-rays showing insufficient progression in the joint damage to have to take another chance with another drug. He's also said that they'll ultrasound my feet next time as well to try to pick up any inflammation as my bloods never show anything. I'd much rather not take the stuff unless absolutely necessary and if I'm careful (which I'm not very often) I can manage OK even though I still do a lot of moaning!

Wondering how you're managing and whether or not you've got any further with a firm diagnosis?

Sara