New to RA, lots of unanswered questions

marbleeyeddoggy

Hi all,

I am 32, new to the site, relatively new to RA, have a lot of unanswered questions, if anybody could help, please.
My background: 3 yrs ago I was diagnosed with an "auto-immune rheumatoid disease": high antibodies, very high rheum. factor, weak knees gave way, hard to walk, do stairs, slopes. Hydroxychloroquine helped a lot with knees and I was doing OK. Jan 09 my fingers started to go stiff and wrists swelled up for days, agonizing pain... GP requests emergency appoint., my rheumatologist(whom I last saw Nov 2008) refuses to see me until our next scheduled app., Aug 2009.
GP writes, I call, e-mail, I am told I wont be seen unless new clinics are opening. Going through hell, as I have nobody to turn to, suspecting that swelling might be a side effect of Hydroxych., I get off it for 4 weeks. Swelling gets worse, affects every single joint in my body, I get crippled, have to be dressed, bathed, have to pee in a bucket as I cannot use legs. By then I know it is RA, and what it means, I quickly get back on Hydroxych. Aug 2009 my Rheumatologist finally sees me and puts me on Methotrexate. I have been on it for 5 weeks now, and suffer terribly from nausea, stomach pains. How do I know it starts working? Funnily enough I have been relatively well since Aug, no major swelling, loss of function. So how will I know?
Also anybody could contribute w/ a few ideas on PREGNANCY WITH RA? I know I have to get off this horrid MTX 6 months prior to conception. Hydrox. is said to be safe, but I could not do it, I would have to get off that as well. But that would mean that I get crippled again as before. I have no children and I feel it is now (within one year) or never for me, as I have endometriosis as well. If there is anybody out here who had a pregnancy with RA, or while on Hydroxy., please get in touch. Any support is appreciated. Many thanks. Maria

elnafinn

Hi Maria

Firstly, welcome to the forum. I am so sorry to read your story. I am afraid I do not have RA but one of the other "arthurs" and also had my children pre arthritis and they have well flown the nest and one has a baby of their own.

I have bumped up a thread on Arthritis and Pregnancy which is 18 pages long so hopefully it may be of some help to you. I am sure other mums to be or mums TTC will answer your thread, sooner or later.

Look after yourself

Luv
Elna x()

frogmorton

Hi Maria
Welcome from me!
You have had one hell of a time haven''t you? i so feel for you - what a horrible rheumy I cannot beleive you had to go through all that pain and indignity.
You must be one amazing person to have got through it......
therefore i reckon if you want a baby you'll do your best to have one!
As you have already seen (C/O Elna I reckon) there are pregnancy threads on here which should give you that sort of more specialized info. I do know that steroids are ok i think at low doses. I am lucky wel;l on hydroxy and that I already have my children.
I would love to know how you get on and wish you all the best.
take care
Toni xx

Wonkylegs

HI maria,

so sorry that you have had such a bad introduction to life with Arthur in tow. I must say that your Rheumatologist sounds very inflexible. When I have had problems my GP has been able to ring my rheumy and get an earlier appointment, even when the clinics are full.

The other way around it is that if you have a Rheumatology nurse ( you probably have a helpline number for them cos of the MTX?) they might be able to sort you out with help in the meantime if the Rheumy still refuses to see you.

As to knowing when MTX works - it is not that easy to give you an answer. I tried the tablets for many months, and although there was an improvement in my blood results, how I felt was not improved by the side effects. I too was troubled with the nausea, and had to take other drugs to help - ask your GP if it gets too hard to live with. When the tablets were not working for me they changed me to MTX injections ... they are absorbed better by the body for some people, and they worked a lot better for me. I don't have as much problems with nausea either, so there are options when you have given things time to settle down.

I'm not the best person to advise you about conce[ption, but elna has found the best thread to bump up - well done elna again!! just to add that your GP can ask teh NHS specialist unit for more specific info on pregnancy and certain drugs - my GP did this for me.

mrsdalloway

Hi Maria welcome you are in the right place between us all we could run a rheumy department!

First of all your consultant sounds useless and I would suggest going back to your gp to discuss other/better hospitals in your area. I speak from experience as my first hospital was useless and I ended up having tkr at 35 that could have been avoided. 2nd hospital is a hour and half round trip but worth it to save joints!

Secondly, babies, I was diagnosed 14 years ago after birth of first daughter. I then had 2nd daughter 3 years later. I have been on sulphasalazine throughout 14 years although stopped for 2nd pregnancy. Before getting pregnant I would get your RA on an even keel and for that you need a decent rheumy consultant. There is other meds they can give you to get it under control that are not as agressive as methotrexate but at this stage it is just a case of seeing what works.

Won't go into too much detail here as don't want to waffle too much but if you want to ask anything please feel free to pm me

Elissa x

marbleeyeddoggy

Thank you so much everybody for your kind words and advice. It means a lot.
I know my Rheumatologist is a waste of space, and I will have to try and get a new one, that is a priority. I asked my GP and he says it`s the same care everywhere. So that`s helpful.
Thank you for the threads on RA and pregnancy, it will keep me busy for some time. Great source of info.
Will be back with some more questions and worries, I am sure, and with how I get on.

Maria

livinglegend

marbleeyeddoggy wrote:

I know my Rheumatologist is a waste of space, and I will have to try and get a new one, that is a priority. I asked my GP and he says it`s the same care everywhere.

It's not the same everywhere. I have an excellent Rheumy and also a phone number where I can contact the local Rheumy Team Sister if I need to.

Good or bad seems to be patchy and I would suggest that you request, (as others have commented), a new Rheumy. Also ask to be put in touch with your local Rheumy Team, who you should have been assigned to anyway. Very often this vital connection is not done.

I hope that things get better for you. Not good at the moment.

Joseph 8)

tkachev

My Rheummy is great too.I was able to get quick appts when i deteriorated suddenly after daughters birth(6 tomorrow!).They told me off for suffering in silence for a few months!
I developed R.A after my son born in 1999.After treatment I did get better and then had my daughter in 2003.I was on sulphasalazine throughout pregnancy but didnt get prescribed the stronger drugs until after her birth.Pregnancy went very well.
Good luck
Tkachev

woodbon

Hello I'm so sorry your having such a bad time with your rheummy. He sounds like a typical 'Jobs worth'. Sometimes I wonder why these people go into medicine at all, but I suppose that they see so many people suffering that they become immune to it. Thats not good medicine though. Hope you are not too bad at the moment. Have you tried talking to your GP again? I had to do that to get re-re-reffered to the rheummy, and she got a quick appointment. I'm sorry if you mentioned it in your post, but I've forgotten, head like a sieve these days! as for endometriosis, I've had that in the past, I'm 54 now, are you seeing a gyne for that? Their are lots of threatments out their, and sometimes nature will just take its course, but I think you should make sure all the docs treating you know about the RA. Take care, Love Sue