Rascals - Wear A Smile Not A Frown

Hi Claire

Am sorry to hear you are having such a rough time of it. Claire I am chairperson of Rascals if you would like to give me a ring (01323 410820) I am sure you will benefit from coming to Rascals and meet other people who have the disease. I also went through my divorce and lost my mother so I know what you are going through.

We are a great group and I sure it will help you in a lot of ways.

Please give me a ring

Jacqui

Thankyou so much for your advice Tony. Since i last mailed i have been to see Dr.Sam and he has prescribed me daily steroids and Pregabaline as he indeed agreed that my pain needs to be controlled. I have to go back & see him in 4 months. After i went to see him i had one of my worst flare ups. What didn't help was that i had to wait 2 weeks before Dr.Sam had written to my GP to prescribe these drugs so when i was at my worst i was chasing hospital and GP and it took me to end up in tears over the phone to get something sorted. My own GP rang me and apologised profusely and told me in future that i must speak directly to him. He ended up prescribing the steroids and pregabaline as well as Oramorph which he wants me to keep as a breakthrough drug. The thought of taking Morphine kind of scared me but being in so much pain i took it. Wow what a wonderful feeling after i had!!!! it certainly helped the pain and i managed to get by with only 3 doses. It now stays in the bathroom cabinet for when i get really bad. I have now been on the steroids for 2 weeks and have felt a lot of relief. I started on the Pregabline last week and each week i have to increase by 50mg until i get up to 300mg. I think the combination of the drugs is really helping me and feel a lot better. I am obviously not pain free and dealing with the side effects but just to get rid of half the pain i was in is a big relief.

I will look up NRAS and would definitely like to come meet you all at RASCALS!!! would be so nice to meet fellow RA sufferers. I just need to get life a little sorted (i am going through a seperation with my husband at the moment) and will certainly come see you all.

Thankyou once again!

Dear Claire

Ref your recent post I hope your visit to Dr Sam has proved helpful in getting medication which works with the symptons. There is no doubt that getting effective medication is a major step in combating the condition but we all know that RA is a contrary disease and there is no regular pattern. However you have found the RASCALS web site so you now have contact with many fellow sufferers who have probably been through many of the issues that you are suffering.  My first step would be to call the NRAS helpline (0800 298 7650), it is free and they provide help and advice. Second step try to get to a RASCALS meeting. Speaking with others who have RA is always and illuminating and in my opinion is a useful and helpful thing to do.

Remeber you are not alone there are a lot of us that go to the EDGH. Good luck and keep positive

Tony

I am 37 years old and was diagnosed 4 years ago. I have been on several drug trials including Methotrexate, Embrel and Rituximab, all i have either been allergic to or have not helped. I am currently just taking Salazopyrin (2000mg daily), tramadol, Diclofenac and regular steroid injections after the last spell of Ritux. I have my next appointment with Dr.Sam at the EDGH on 22nd to find out the next step. I lost my Mum just over a year ago and am now seperating from my husband so life is pretty stressful on top of the disease itself. I have just found RASCALS on the web and would be grateful for any information and/or advice. Life can be very isolating and i do not know anyone else local with RA.

Hi Noelle

Well sadly flare ups are common with R. A. and tiredness is one of the side effects that goes with it. The only thing I can suggest is try and limit what you do and rest if you can. It maybe your consultant will increase your methetextrate also having lost your father such a short time ago will upset your stress levels which does make you tense and does seem to upset the joints, it did with me when my mother died, I also notice it seems worse when I am stressed or worried about something. I can only suggest try and relax until you see your Rheumatologist. I sorry if this is not very helpful, but can only tell you how it affected me. Good luck with your appointment in June and please let me know how you get on.

Best wishes

Jacqui Chair

Hi Rascals, I've had RA since 1993 when I was in my late 30s and it has flared from time to time but I have been lucky enough thanks to Methatrexate to work round it. I have lost all the cartilidge in my wrist and have very vulnerable knees but still swim and play tennis. However my father died a couple of months ago and I am now feeling much weaker. The bones in my feet ache most of the time, my hands are stiff when I wake and my knees and shoulders ache a lot. I am also very tired most of the time. This feels like a flare up although I don't have any great inflammation. I don't have an appointment with a rheumatologist until the middle of June so can anyone suggest what I might be able to do to help myself. At the moment I take 7.5mgs MXT weekly and voltaren as needed.

Many thanks for listening

Noelle

I am sorry that you are so young and struggling I wish I had a magic wand and could wave it over you and take it away. Like you I also ignored for a number of years. Is their a support group in your area?

If not go on to links and if you click on to NRAS they have a number their which they will be able to tell you if you have a support group near you. They also have a lot of books if you look and see which ones you need and they will send them to you. If you go into articles you will find my story on their and how I coped with the disease. Jacqui Page. My number is their in contacts if you wish to ring me. I am sorry I hope this is some comfort for you.

Best wishes

May I sugest that the poster above looks on the NRAS website for advice and support?

Thanks

I am 19, and was diagnosed with Rheumatoid Arthritus just over a year ago. To begin with I ignored the problem, and tryed to forget about it, I want to be a nurse and decided if i ignored the issue then it wouldnt be a problem, although now I am beging to see that this is not the answer. I am 19 and already this illness seems to be taking over my life, most univercitys wont give me a place to do my nursing degree because i have rheumatoid arthritus, I have regular hospital visits and visits to the doctor and yet i still seem to be making no progress. I am lucky that i have a supportive family and partner which helps. I feel usless now, doing normal things isnt easy due to the pain and stiffness, and I seem to be always tired.... and yet i am told its only going to get worse?? To top it all off, i am taking naproxin and sulphasalazine and gettin indigestion... and recently have been finding it difficult to sleep at night, however i lie i am uncomfortabe or acheing, and i am only getting a few hours sleep a night.... Can anyone please help? Im not to sure how i am going to cope with this for the rest of my life....

As Chair I would like to welcome you to Rascals website I hope you will ask if their is anything you wish to know . We are a help and support group not medical so those questions we will be unable to answer, but may be able to direct to other scorses. Thank you.