Hi, went to see my consultant yesterday for my 3 month appointment after being on Methotrexate for that time, he said my imflammation had not gone down but how of i got on with it ? I told him about the red sore rash i got when i went in the sun, the headaches, ulcers, spots that never go away, dry itchy skin, upset stomache etc, and he said to stop taking it as its causing more problems than solving them. I had been on Hydroxychloroquine before but had to stop as this caused swelling on the side of my face .He said that it does seem my body does not like the RA drugs ! While he was prodding and pushing my joints around he said i should do more exercise, i work 30 hours a week in a school, do yoga when i can and walk dogs with my partner when am not too tired, i am a size 14 so not too overweight.He said to come back in 8 weeks and give my body time to recover from these drugs before starting another one.
I came out of the office deflated, feeling crap, am obviously not exercising enough and its my fault that am not getting on with the medicine's.
Has anybody else had problems with the drugs i have had ? And what do i go onto next ?
Since being diagnosed in Oct 10 where it was in my knees and hip it has spread to my wrist, fingers, neck, and i now have pain in my heels and toes making it painful to walk.
Feeling really down today !
Karen x
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Kaz1
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Hi Karen, so sorry you are having such problems. I had sickness,nausea, dry itchy skin (which I still have), mouth ulcers which most people on MTX suffer from, etc etc. I was changed from the tablets to injections which helped a lot and got rid of a lot of the sickness and nausea. Still have problems with skin, and mouth ulcers. My dentist recommended Corsodyl to combat the ulcers as it is antiseptic so I use it when I need to. Also try Bonjela - it is very good at getting to grips with the little blighters. For dry skin you need a cream which has ureic acid in (not sure I have spelt that right!) I was referred to a dermatologist initially because of a suspect mole but when she saw the state of my skin gave me a list of creams to use. You should only take Hydroxychloroquin for a maximum of 6 months according to my Rheumy and the blurb on the packet. If it doesn't work, you come off it - it also causes rashes incidentally! I am really surprised your consultant is so negative. I suggest you go back to your GP and have a general chat about it. There are many drugs out there which deal with RA - it is a question of finding the one that suits you. Has he suggested going onto anti TNF therapy at all? Worth asking him next time you see him. I suggest you contact his office and get an earlier appt. Go armed with booklets from NRAS as well so that you can blind him with science for a change.
Get your fee checked out, it may be plantar fasciitis which was the first warning I had of the RA starting up 3 1/2 years ago. Hope you get on ok. Let us know. Love LavendarLady xx
Hi Karen, I had very similar reactions to you on 15mg mtx tablets and within 6 weeks my liver became toxic.(I have never drunk alcohol in my life either!) Was taken off mtx and my consultant was much the same as yours leaving me feeling terrible with no where to turn to. When I questioned his 'diagnosis' he asked me to register with another consultant - you can imagine how I felt. Fortunately I have a great GP and she asked if I could afford a private consultation to get on another consultants books without 6 month wait which my GP thought I would not handle well as I was practically bed bound. It cost £220 but I was thoroughly examined and immediately put forward for anti-thf drugs as I was in such a bad state. The same consultant now treats me under the NHS and has been great. They also referred me to hydro therapy as I couldn't manage any excercise and I have been on Cimzia since October with good results. I shouldn't have to have gone this route but it was the best money I have ever spent and got me the treatment everyone deserves. Go back to your consultant or rheumy nurse and ask to talk treatment options over. I also found the local support group an excellent help as I just didn't know what to do or where to go at the beginning.
Hope you manage to get sorted soon and don't worry about weight etc as size 14 is not large at all............
Love Sue
Hi
sounds like a rubbish consultant to me sorry. I think you need to decide if you feel u have aggressive RA . I was diagnosed in oct 10 and also have failed at methotrexate due to side effects. If u have high levels of inflammation for along time that carries risks which counteract the risks of meds. U dont want a heart attack or stroke or disability etc its difficult but I would try to find out whether I met the rheumatologists defintion of severe RA I cant remember the clinical definition but its variables like
ESR and CRP count ( how high)
How many joints are involved ( DAS score)
nodules ( tend to be associated with more aggressive disease)
Rheumatoid factor tends to be higher ( not always though some sero negative people have a rough time too )
There is a precise diagnostic definition if you surf around a bit think its pretty much the same between USA and Say European rheumatologists.
If its severe its needs treating quickly or else much more likely to have silent melt down with joints.
#Dont mean to scare you just to suggest positive way forward as many of us in the same boat !
Good luck
fi xxxxxx
Ps I am totally fed up about my weight I am now size 18 due to loads of steroids including infusions with biologics and also daily !!! I feel massive especially in this hot weather plus am sweating loads urgh !!!
Hi Sparkle, I had the same problem with massive doses of steroids. Went from a 12/14 to a size 20 and couldn't believe my scales.
Went on the Dukan Diet and managed to lose 20 lbs. Having no thyroid doesn't help either although I take Thyroxine daily. Now cut the steroids right down to only the occasional injection when really needed and that has helped with the weight as well. My GP suggested steroid tablets which I refused immediately as my consultant told me that once on the tablets you never get off them! I am now a size 16/18 and still trying to get the weight down. having had cancer as well some years ago was constantly being told that my weight staying up was a good thing! it may have been but didn't help when trying to get smart clothes etc. Hope it improves with time for you. Luck. LavendarLady
I really hope that I can shift this weight I feel so fed up and down especially in the hot weather! Whats the dukan diet? I just picked up a leaflet from booys about a slimming pill form people with a bmi over 28. Thats me i think Oh pants !!
Hi Sparkle, the Dukan Diet is a french diet slightly similar to Atkins but after the initial attack days which can be anything from 2 - 5 days when you eat only protein you then go onto protein with veggies with only 1 day a week protein only. Until the weight is down to your target (whcih they set for you so it is realistic) you remain on this and then go onto the next phase where more foodstuffs are added back in. They do have a website. Just put Dukan Diet into your search engine and it should come come with all the details. good luck. LavendarLady
Have you tried sulphasalazine or leuflunomide? I couldn't take hydroxychloroquine because it caused really bad stomach cramps. I tried methotrexate but like you I wasn't getting much control from it so the sude effects were not worth it. I have been taking sulphasalazine for 4 years with no side effects but not getting adequate control. I have recently added in leuflunomide. It is too early to tell how well it is working but so far not suffered from side effects much.
Don't panic different drugs affect different people differently. You just need to find the right ones for you.
Becky
Hi sounds to me that you have a very unsympathetic consultant.
I am a size fourteen in my head only, and my rheumy bods have been great never mentioned diet or excercise. I have tried leflunamide and sulphazalasine with bad reactions couldn't do hydrochloroquin because of eye probs. MTX was fine so now on that and Cimzia anti-tnf and feeling better than I have in years.
Hang on in there and don't be brow beaten. remind the consultant that though excercise may help it may not and it definitely won't cure you.
Remember NONE of this is your fault, you have RA and it needs treatment. If the consultant doesn't help ask to see another one .
Thank you so much for all your comments and lovely advice, it is good to know i am not the only one with complications in their treatment, i only hope i have better luck with the next one !
I always feel rushed when i go to see him and i have all these questions written down and i never seem to get answers !
He sent me off with a prescription for Meloxicam tablets to take for the next 8 weeks, looked at the side affects for these and they can cause similiar problems to the ones i have been having with MTX, not sure if i want to take them at the moment !
Karenx
im 5 foot 1" 154cm and with steroids.. still on them zoomed up to size 16 and gained over 1.5 stone slowly loosing it as I reduce my steroid dose.. yes // size/ body image in the head but none of my clothes fitted its not easy
I think you need a second opinion? there is still sulphasalzine and leflumomide.. one of the side effects of this is weight loss.. but size 14 is not big!! ( also gold and penicillamine are occasionally used!.Im trying to get back down to 14 from sixe 16 .. steroids.. inactivity and bad eating have helped my gain.. went to nras conference and they site the mediteranean diet as being the best healthwise for Ra!. you also might get lucky and if appropiate to you an anti tnf. biologic treatment.. good luck Kaz Alison xx
Hi Karen. It sounds like you're receiving a really bum deal from your consultant. I personally wouldn't be entertaining that sort of treatment from healthcare professionals, but I appreciate where you're coming from in the sense of being fairly newly diagnosed and not wanting to question 'experts'. I think that everyone may feel a little rushed for a consultation/ review, and I understand this given that time is limited; I often feel hacked off & short changed, so I save questions for my GP. I firmly believe that therein lies the answer. What I would recommend is that you return to your GP and tell him/ her that you are unhappy with the care that you receive at the hospital. Obviously, this is dependent upon the relationship that you have with your GP, and whether or not they are a really good one. I count myself as extremely lucky where I go, and would be happy to see any of the four doctors within the practice where I am a patient. Please bear in mind that once diagnosed, it will be your GP who delivers most of your care and almost all of your analgesia, so they will always know your case best, and will also act as as a mediator when you're feeling seriously fobbed off. I recall my own bum deal & explaining to my GP that my call for answers were being ignored (I had been ringing up the rheumy nurses line telling them time & time again that my drugs weren't working). The moment my GP called up (when I was in surgery), they rang straight back. I know this of old anyway, that they will take more note from another healthcare professional. Perhaps it was useful that I knew the game (I achieved my RGN/ RSCN in 1990, and my RMN in 1995). I personally couldn't hack it as people weren't treated as individuals.
Unfortunately, services are completely oversubscribed & innundated. I find it almost impossible to believe sometimes, as RA isn't actually that common. However, it's a really unpopular medical field to go into (apparently! I can understand it, though, as I don't suppose they get a lot of variety!). As with any job, you will find people who are exceptionally good & passionate about what they do, and then there's the others!
That's my advice: to speak to a really good GP who will advocate on your behalf. Good luck luv! Andrea x
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