[Woo]

Hi again it's a while since I posted, I thought there was light at the end of the tunnel and then my next appt got bumped to May... lucky me managed to get a cancellation at the end of Feb so nearly there.

I'm not sure what they are going to say is going on with me, I would like to know so I know what I'm dealing with...

My ANA was at 1:1000 from the bloods they did( it's the scale my hospital use apparently!!) I was diagnosed with mild Rheumatoid Arthritis about 4 years ago, anyway the pain and stiffness was getting worse hence my visit again to the rhuemy....I'm now finding myself struggling to get out of bed some days, I don't mean in the can't be bothered sense, I can't actually physically get myself moving, some days my hand and feet are like stone and are so painful to move. I also find myself sat with gloves, socks and a heated blanket with the heating on full some days as my hand and feet are like ice and others my hands are so hot and painful I can bearly let anything touch them.

I used to think I was tired because I have 2 children, one is only 18 months old and I work as well so who wouldn't be tired, the Rhuemy gave me a steriod injection on my last visit and it worked wonders... it's obviously worn off now.

My poor husband does his best and he's brilliant I just hate feeling like this, I'm 34 and it's not fair on him or my kids...

Anyway, my question is - from those who have been through this already would the doc look to start any treatment this soon, I'm not sure how long I can struggle on for... I'm on diclofenac and co-codamol at the moment but somedays that barely helps.

Thanks again for your support

Woo

 

[Lily]

Hi Woo,

I'm glad you don't have to wait until May to see the Rheumy again!

I't really impossible to say what one doctor will do over another. Most won't prescribe something like Plaquenil (our first line drug) until they are very sure it is at least some type of autoimmune connective tissue disease. Even if it's prescribed it can take a couple of months to start helping rashes, fatigue and joints. Any other problems usually can take up to 9 months to correct. It's not a quick fix but it's a very good med.

I guess the best advice we can give you is to make sure you tell the Rheumy what has been going on since your last visit and how the Pred helped you so much and now that it's worn off you feel absolutely dreadful again :hugbetter:

I do feel for you, being in limboland is not a nice place to be. Having young children and a full time job is extremely demanding on someone who is well, if you are unwell it is incredibly difficult for you ((((((((Woo))))))))

I have everything crossed for a good appt. do let us know how you get along?

ps, you have had a look at the criteria used to help diagnose lupus which is pinned at the top of this forum? Any of those symptoms which you have experienced either in the past or are experiencing now will help with diagnosis, so let the doc know.

love
Lily

 

[LolaLola]

Dear Woo, They don't rush to diagnose Lupus as it has quite big implications for things like life insurance, travel insurance etc. Nonethe less you should be helped. The fact that the steroids worked so well seems to confirm that it was inflammatory. How good are your Employers? Have you told them anything yet. Having to work and have young children is very hard for anyone,especially feeling ill.
x Lola

 

[Maia]

Did they try you on any medications for the "mild" RA besides pain medications? It seems fairly obvious you have some type of autoimmune CTD, and RA patients will also be placed on Plaquenil (or other drugs) for treatment. At your next appointment, you may have to ask to be placed on a DMAR (disease modifying anti-rheumatic) drug. There are a lot of medications out there that could better help you than the NSAID and pain meds you're on at the moment...

I hope you have a fruitful appointment and let us know what happens.

(((Woo)))

 

[Woo]

Hi Guys

Thanks for your notes, thanks Lily I've gone through the critera and also the alternative crieria, there are a few things that definetly ring a bell.

Luckily enough I can sometimes work from home so I try to do that at least once a week so I'm not getting up as early. I'd feel like I'm whinging to my boss and I'm managing at the moment I've not really spoken to him about it, he's been really good about time off for appointments.

I've only been on a variety of NSAIDs, celebrex, vioxx etc, I managed without anything for a while and then after my youngest was born I have needed to go back on them and the symptoms have got worse. I'm also awaiting for the results of "the cold challenge" test, I should get that as well on my next appointment.

I guess I'm just so used to being able to solutionise problems I'm getting frustrated as this isn't as straight forward....

Odd question for all; mouth ulcers have been mentioned, what about abcesses, I've had so many I've lost 4 teeth my dentist has said it's likely to be a circulation problem. Has anyone else had this, is it worth mentioning to the Rhuemy?

Thanks again, it's good to know there's support for those of us in limboland...

 

[Joandublin]

Hi Woo

Im really glad to hear that things are moving along a little bit quicker than expected. Hang in there. It wont be long til the end of February.

You asked if you should tell your Rheumy about your recurrent tooth abscesses. Definitely mention it to him and also the comment from your dentist. Sjogren's Syndrome, which is another autoimmune disease, is often associated with dental decay including abscesses. See this link

http://arthritis.about.com/od/sjogrens/ss/drymouth_4.htm

Heres another link about Sjogren's which gives more information.

http://www.medicinenet.com/sjogrens_syndrome/article.htm

Its very possible to have overlaps of several autoimmune diseases so therefore any troublesome or ongoing symptoms may form part of a bigger picture so its well worth your while informing your rheumy of everything. It helps them do their investigations better.

The very best of luck next month!

Luv n stuff
Joan:rose:

 

[Woo]

Thanks Joan

I've put together a bit of a list and I'll make sure I add this to it.

I'm hoping that my next appointment will be useful, I'd just like to get back to normal ( whatever normal is:rotfl: )

I'll keep you posted... just ticking of the days now

Woo xxx

 

[cispence98]

Hello there!! I feel for you, I remember before being officially diagnosed I was unable to move, eat or do anything I felt like I was made of glass and if I moved I would break:worried: Hopefully you will get the meds to help you at least be able to function a little better, even if they don't officially diagnose you with lupus they need to treat the rheumatoid arthritis to slow the progression of the disease (my dad has it so I understand your pain) I pray you will get the answers and relief you need soon!!
Its always good to have a lists I also requests any blood work I ever have done so it can go with me to all my docs!!
Take care and good luck I look forward to hearing what your doctor says!!
It won't be long!!

 

[Woo]

Thanks Laura

It's hard trying to get people to understand sometimes how awful I feel. I put some make up on and do my hair, it's become a habit now. I think to myself if I look okay on the outside then maybe I'll be okay on the inside, I don't want to give into this... and it actually does sometimes work. It just seems to get harder.

Only 4 weeks to go, hopefully they confirm either way about Raynauds as well.

I'll keep you all posted.

Woo xxx