Newly diagnosed RA. Help!

Dear Matrixa

I'm sorry I can't help you with your decision as I am new to all this too. I was told 4 weeks ago that I have RA. I am seeing the consultant again on the 25th August. I would be very interested in what you decide to do and also in your experience so far. At first I was told I probably had lupus, then possibly RA or a mixed disease. I have had the RA confirmed after a hand ultrasound (I was told by the person who did the scan and it was a shock) but am waiting for a formal diagnosis from the rheumatologist.

I hope you can get in touch.

Best wishes Naomi.

Hi Both

I've just been diagnosed as well with RA. My diagnosis was confirmed in December and so far I've needed 3 steroid injections in my left knee. I can't carry on with just Naproxen any more and I'm scared of Methotrexate's side effects. So my rheumatologist has just started me on Sulfasalazine. I've only taken two tablets so far so I've a while to wait to see if it has any effect.

How are you both getting on? Hope you're feeling better.

Hi, I started with steroid injections that lasted for a month or so. Then had all sorts of tests done such as lung function, chest xray, all kind of blood tests and went back after a month and was prescribed the Methotrexate. I previously read about All kind of scary side effect and my nurse did explain as well and one thing that dawn on me is that if i make sure that i do not miss any of my blood check up I shall be covered. So I did just that every 2 weeks i have my blood tests and do not miss any of my check up. Every thing is going quite fine at the moment in comparison to how I was previously. There was a time I even wondered whether I would end up in a wheel chair. I am back at work and my employers are very sympathetic and they are easing me back into work. one day on and one day off. This is helping tremendously. I still go up the stairs one step at a time. but my legs are getting stronger and the bad pains are gone . I do have my odd moments, particularly with the extreme cold, but i can say that the Methotrxate is working for me and I am not experiencing any major adverse effects apart for a few itching part on my arms. i have seen the dermatologist and they said that it was not related to the Met.I have been prescribed some topical cream to use and at my next check up it will be assess again. So so far as it goes my treatment is working for me.

Hi all, I am also newly diagnosed and currently taking Sulfasalazine. I was recently approached by a company (trials4patients) regarding a trial they are running for patients with RA. Its for a new treatment FX125L and they say you can't be on MTX to be legible which I'm not. I'm curious and willing to help to a good cause but at the same time a little cautious.. What is your opinion about trials for new treatments?

Hi Sandra, As far as i gathered through reading various information, the phase 1 of the trial has been completed and that involved healthy volunteers and mice etc Lol. on a serious note I do not know if there has been any trials on RA sufferers. As with all trials, just ensure that you are sufficiently informed of everything and do a bit of digging as well. If you google the number of the trial you will get a few info. try other search engine as well. I am also supplementing my treatment with the ganoderma coffee and it is helping me I do not know about others but one thing I found out in my investigations was that there are some research papers out there helping me make an informed judgement. I do wish you all the best.

Hi

I haven't been approached by anyone about clinical trials but I do happen to know a thing or two about them as I work in our local hospital as a clinical trials administrator! Although - our studies are cancer-related not rheumatology.

Normally you should be approached about taking part in a clinical trial by your specialist nurse or consultant rheumatologist at the hospital rather than by one of the companies directly, so please be cautious on this. If in doubt please talk it over with your specialist or GP first.

I have been on my Sulfasalazine for a week now, one tablet a day and I haven't had any result yet from it - or side effects either but it is early days yet. I have to go up to two tablets in a week's time. My rheumatologist said it could be from 6 to 12 weeks before I see any improvement in my symptoms. Luckily I only have problems in my left knee at the moment and can cope on one Naproxen a day. I want to avoid another steroid injection if I can.

Hope you are all well. Let me know what you decide about the trial!

Hi

I haven't been approached by anyone about clinical trials but I do happen to know a thing or two about them as I work in our local hospital as a clinical trials administrator! Although - our studies are cancer-related not rheumatology.

Normally you should be approached about taking part in a clinical trial by your specialist nurse or consultant rheumatologist at the hospital rather than by one of the companies directly, so please be cautious on this. If in doubt please talk it over with your specialist or GP first.

I have been on my Sulfasalazine for a week now, one tablet a day and I haven't had any result yet from it - or side effects either but it is early days yet. I have to go up to two tablets in a week's time. My rheumatologist said it could be from 6 to 12 weeks before I see any improvement in my symptoms. Luckily I only have problems in my left knee at the moment and can cope on one Naproxen a day. I want to avoid another steroid injection if I can.

Hope you are all well. Let me know what you decide about the trial!

Thank you both for sharing your views and for your advise. I'm not sure if I will be suitable for this one due to not being stable but would be open to doing one in future if the opportunity allows. I find it quite fascinating that there is contant research happening for new treatments and if people didn't help they wouldn't get far in developing better medicines. Thanks again, all the best to you both

hi, i was diagnosed with RA last april, my rheumatologist said i will have to take methotrexate i had no idea what it was. So did my own research and found it so many side affects i decided not to take it.Prior to be diagnosed whith RA i suffered with swelling and severe pain in my left hand,it got so bad i went A&E.to my suprise they kept me in over night and gave me an antibiotic drip through the night.i asked them why and they said i may have bad infection it did clear up with in a few days and iwas fine.I told my rheumatologist this and asked could i have the antibiotic treatment for RA she said no it has to be methotrxate it was the gold standered for RA .they gave me another option sulfasazine so i tride it and i kept geting infections ,and one day i went back to se her and my finger was red with infection they prescribed a course of antibiotics and guess what the selling and pain disappeared.What i have found is that all drugs to treat RA has very bad side affects and antibiotics seem to work for me. do your own reaserch there is a lot of information out there also ask your rheumatologist about antibiotics. I am not saying i dont have RA the blood test shows that i do,but there is other treamaent out there hope this helps

Hi, i have RA in both knees and have for 5yrs! but 4yrs ago i had YTTRIUM SYNOVECTOMY injections, and felt 100% fit for three years without taking any other drug in that period. But after that time it came back and i was back to square one after a wait i had them injections again but unfortunatly only lasted 5wks!!! Now i have just had an opp to remove any inflamed synovial tissue via keyhole, this was about 6wks ago, dont think its made any difference cos im in lots of pain still!!! the point where backwards is the only option in the morning to get down the stairs. Really dont know my next route now! FUSTRATED!!