Questions from a newbie

Barbieg

This is only my second post, I had asked about mouth ulcers and medications. I tried getting hold of my rheum my specialist and was assured she would ring me, but have heard nothing despite ringing again. I was told to stop taking my Sulfasalazine immediately because of the ulcers, which I did and also stopped taking my etodolac (anti inflammatory ) I have only lasted 1and a half days as the pain was so bad. Have gone back on the etodolac and am feeling much better. My questions are, is there a different anti inflammatory I can take or do they all say mouth ulcers are a side effect? I would also like to find a different rheumatologist . My original one gave up NHS work 2yrs ago, and he was fantastic. Since then I've been seen by 3different ones and the latest one just doesn't give me any confidence in her. In fact I only get to see her once a year and a nurse in between. If I have a problem like I have at the moment I have no one to contact other than the number I rang on Wednesday , which resulted in nothing. How do I go about changing? Hope someone can give me some advice.

dibdab

Hi there, sorry I can't help with meds- have you tried speaking to your local pharmacist about anti inflams?

As for changing rheumy- it is possible, I did so about 2 years ago after some very unsatisfactory care from my original consultant. I spoke to the Patient's Liaison department at the hospital who advised me how to go about it and were tremendously supportive. In a nutshell what I had to do was go back to my GP, explain the problems and ask to referred to another rheumy-I actually asked for a particular named one who was recommended by 2 friends who also have RA and see him. It took several months in all but for me was well worth the effort.

I guess the hardest part is taking the first step, and it's probably inevitable that sometimes we come across medics we don't gel with. Maybe it would be worth making a preliminary phone call to PALs at the hospital, and talking to your GP- they may be able to recommend a different anti-inflammatory and a new rheumy! I do think it's essential that we trust our consultants as they are prescribing some powerful drugs which have all kinds of side effects.

Deb x

valde

Hello I was not happy with my first rheumy consultant and we did not seem to gel. He did not explain things to be in detail and I felt I was a nuisance asking so many questions. So I came out not knowing which way I was going. So I did what Deb did and went back to my GP and asked to be referred to another one which he did . He was very helpful and said this sometimes happens when medic does not gel with patient and I was not to worry about it. I now get more from my appointment and he explains all in detail, and it was also at another hospital which is nearer to my home. So all in all it worked for me. Go back to your GP and talk to him/her face to face and I am sure they will help. Good luck

barbara12

Hi
Mouth ulcers are so blinking painful,so I do feel for you..like one of the others have said I would ask at the chemist about the antiinflams..they are usually very helpful
Has for getting a different rheumy yes just ask your GP...good luck and please let us know how you get on

Barbieg

It's me again, my rheum consultant did eventually ring me just before I left for my oral app. I told her I had stopped both the Sulfasalazine and etodolac. Of course she didn't think it was either as I,have taken them for ten yrs. maybe she's right? The oral consultant wasn't even interested in my ulcers as she said they come and go, so not a problem. She saw two white lines which my dr had already said it might be Lichen Planus. Was told I would be called back for a biopsy but it was non urgent. Can't say I was very impressed, the nurse chattered quite loudly to my hubby who came in with me just so I didn't miss anything important, so he couldn't hear what was said to me. Told him he didn't miss much as there was barely anything said to me .
I have to say how surprised I was at the speed I went down hill after stopping the pills. Obviously the etodolac was the culprit as the Sulfasalazine takes a while to get into your system. Within a day I was back to how bad id been before I started my treatment 10yrs ago. The only part of my body that didn't hurt were my toes. It was absolute agony and I couldn't get the pills down me quick enough.
Barbara.

barbara12

Hello Barbara from another Barbara
I am so sorry your appointment wasn't much help. it make my blood boil..is there no one you can see or ask for a second opinion someone that will listen to you ...I do hate how these appointments are so hit and miss...you take care xx

MrDJ

hi
ive been taking sulphsalazine for roughly 28 years now and used to be on 6 a day up until 9 years ago when i started methotrexate and infliximab anti tnf infusion.
ive also been on 3 a day froben anti inflam for the same amount of time and never had mouth ulcers with any of them.
i was also on diclofenac voltarol slow release but they stopped them about 10 years ago.

now i do suffer with mouth ulcers once in a while and also have lichun planus which i see a maxcial facial specialist twice a year just to keep an eye on it.

i think my mouth ulcers are caused by the methotrxate which is one of its side effects.

there are a lot of different anti inflams out there but it just trial and error until they find the right one for you.

good luck and i hope they find the right course of meds for you soon.

Barbieg

Mr dj,, my friend has lichen Planus and was recently diagnosed with OA so was put on anti inflams. She had mouth ulcers that became infected within a few days and was put on antibiotics and told to stop taking anti inflams immediately. She can only use the gel to rub on her knee . Just shows you.
I will look up froben and others. I have lots to think about over my treatment and consultant in the coming days so it's such an enormous help to get feedback on here. Thank you for all your replies. Barbara

MrDJ

hi Barbara
i think they are all linked in some way.
i was diagnosed in 1985 with OA. about 5 years later i was diagnosed with ankylosing spondilitus and also went blind in one eye. and then in the last 10 years RA and then 4 years ago PA.

this is all about Froben http://www.patient.co.uk/medicine/flurbiprofen-tablets-for-pain-and-inflammation-froben

i was also given some (i think) steroidal pelets to suck for the lychun planus and also Synalar cream for my lip as it would sometimes spread to there after id had chinese meals.

i have had quite a few other anti inlams over the years but cant remember the names as they didnt help one bit.
i do take df118 dehydrocodein pain killers and morphine when things do get bad but of course all these do is mask the pain the same way steroids do.