my intro... again | Arthritis Information

I just typed this all and it kicked me out!

So this is the short version.

I'm a 27 year old mom of one (my daughter is three.) My husband travels for work and is gone as much as he is home. I was diagnosed last year with RA.

In additon to that I have Factor V leiden and MTHFR (two blood disorders). Because of those after my daughter was born I had a pulmonary embolsim (blood clot in my lung). So I can't take any birth control (I 'd had an IUD and it caused problems). SO my husband had to have a vesectomy so I could take some of the drugs for the RA!!!!

I've tried 7-8 different ones. Most recently was the metho+folic acid (oral and sub-q) and leflunomide. They ALL have made me sick. Beyond nauseous, to where I can hardly get off the sofa.

My doc is the only rheumotologist in like 25miles and I can't stand him. I guess because it's so uncommon for ALL of these to cause nausea he either doesn't believe me or thinks I'm just a pain.

I know my blood levels are always elevated but he has never done any imaging to look at my joints. His NP can see the swelling but he sure has never seemed bothered by it.

This has put a strain on my marriage because my husband sees my fatigue as lazyness, my pain as whining and now we've given up the option of another child for nothing. They were so sure once I was "able" to take those drugs I'd feel better.

For the last month I haven't taken anything (I had just finished a Prednisone taper). I've been putting off going to the doc. I'm going to go back though, and get back into yoga (which I used to be very into) and on days when I can't do that I'm going to try Tai Chi.

I just keep telling myself I have to do everything I can for my daughter. I don't want to be a mom who isn't able to walk Disney World or go to fun stuff!!!

So that's me---- I admit I am kinda whiney sometimes but the RA on top of all the rest just feels like too much. And getting no support from my husband makes me feel "attacked" from all sides!

Aside from the nausea, did any of the various medications seem to help with the RA? Perhaps you could talk to your doctor about taking an anti-emetic for a month or so to suppress the nausea until you get used to the med. Compazine and Zofran are both quite effective anti-emetics and both are available generically. Welcome Kim! Don't put off going to a doctor. Try to find another one even if it means traveling further. Trusting your doctor and having one that makes you feel understood makes all the difference. It's true it may take awhile for you to be able to tolerate these drugs. When I started methotrexate it was gradual. I think I started with 3 or 4 and worked my way up to six where I stayed for a long time. I was also told to take prilosec everyday to help my stomach. I always takes my meds on a full stomach and with 16 oz of water prior and then 16 oz. of water with my pills. I have never had tummy troubles.
Hope you feel better soon.
I had nausea for 2 months when I started taking plaquenil (even when just taking 1/2 dose), but it did eventually go away. Now I don't have any problems at all. Hi Kim. sorry you had troubles posting your intro, but we're glad you did..

as far as the mtx making you sick.. I had a few rough times after dosing.. but no longer does it affect me at all! check into getting a shot for the MTX and by=pass your stomach alltogether.

good luck

I've done the increasing doses. (And the shots of mtx) I think I felt a little better on it (mtx) but not great. -and as bad as my joints are I have been having TERRIBLE muscle fatigue in my arms and legs. To the point where they tremble. So when I go in, the cute little drawing with circles on the joints doesn't tell the whole story.

I guess if I run outta different drugs to try I'll spend months being sick and see if I get over it. (I haven't made it past 5-6 weeks on any) I just always go back to is it worth it?

I know the last two weeks the term "flare up" has scared me. I hurt before- mornings were bad, here and there at different times but for the last two weeks it's been bad enough I think I'd take the nausea.

I did try Zofran on one of them- but my doc only gave me a handful- he said they'd make me drowsy and it "wasn't a good option".

Hi Kim and welcome to the site.

Sounds like you really been having a bad time. Alot of us have been there many times. Have you tried any biologics like enbrel or humira? I was allergic to 3 drugs (sulfasalazine, mtx, and arava). Enbrel does pretty well for me. It's all a trial and error disease. Some work for some and others don't. I see a dr out of my insurance network because we clicked and I know she really cares. I also drive 45 minutes to see her. She's worth it all. I wish you well and fast.

take care

Kim

Welcome!

It takes a very special person to understand RA if they have never had a chronic disease themselves. People really don't get it. How can someone be nearly imobile for the 1st 2 hours of the day but be fairly able after lunch? In the early years of this disease most of us look pretty normal.

There are good articles that may help your husband understand better. Does anybody have a link to the spoon's story about fatigue?

Also the drugs for RA are strong and most of us have had a nasty side affect or two during the course of treatment. Don't give up! Let your Dr know you are not doing well and that you want to find the combination of drugs that works for you. Flat out ask if he is willing to keep trying!

Good Luck to you. I hope you get the support from your husband and dr that you need to start feeling much better.

Hi Kim and welcome to the forum. You'll find much info and support here. The Spoon Theory is a great piece describing how we have to conserve our energy on a daily basis. If I can find it I'll post it for you. It would be a good read for your spouse and also help you to plan your days.

Arm yourself with as much knowledge as you can and go back to your doctor. MXT made me ill and extremely fatigued for the first month or so that I took it. I made it through the first month and it started to get better. I switched to inj. MXT and have no side effects. Everyone has given you good advice and I really don't have anything to add but am glad you're here and keep us posted. I'll try and find the Spoon Theory. Lindy

Hi Kim~Welcome to AI. I'm real sorry to hear what a horrible time you are having. The fact that your husband isn't being supportive and is in fact just the opposite is definately contributing to your problems. RA is closely tied to our emotions and the emotional problems you are having just makes all of your problems worse. I would suggest getting some books or printing some articles about RA for your husband to read. Maybe stick them in his suit case when he's unaware so while he's alone in a hotel somewhere he can read up on the disease that is totally running your life at this point. Maybe include a short note saying how improtant it is to you....and your marriage that he learn as much as possible about this disease that you will have for the rest of your life. We could do a poll here and I'd bet you anything that the ones of us (myself included....I'm very blessed) that have loving and supportive spousese do far better than those that have the opposite.

As far as MTX goes; It took me close to a year or more to totally adjust to MTX. I always took mine on a Saturday and then on Sundays I barely moved all day. It did make me sick on my stomach and I was extrememly tired the next day to the point that if I got up and took a shower it was just to put on fresh PJ's and get right back in bed. My husband told the kids "Do not bother your Mother! This is her rest day and if you need anything come to me. Period." My family only came in to check on me and offer me jello and drinks. I'd sleep most of the day. It was my day of rest. Then MOnday and Tuesday I slowly felt better.....but it took a long time before I adjusted to it. It did however do amazingly well for my RA. All that being said; some people just never adjust to MTX. It's certainly not for everyone.....but there are other medications you can take.

I drive about 50 minutes to see my doctor due to insurance reasons. I only go every three months so it's not that bad. Keep searching. This relationship you'll have with your RD is a long term one. Hell; mine has out lasted my first marriage. CHeck into other doctors. Your isn't a good one and you're going to need a good one.

Hang in there Sweetie. You've already gotten some good advise here....and there's plenty more where that came from.

Hi Kim....I guess I can't add to what's been said, but I do want to welcome you to the board. Don't give up trying to get this "beast" under control. I agree that it's worth traveling a greater distance to have a good RD that you like and that takes you seriously.

These blood disorders, do they effect your daily life? Just curious.

Hi Kim, GI toxicity with MTX can be devastating. I was prescribed 5 MG of folic acid every day when I was tempted to stop the therapy due to this single side-effect. My RD told me to set the alarm clock for 5 AM every morning and 5 PM to be certain the B-vitamin level remain constant.

I now take from 2-6 mg of folic acid depending on my latest set of blood tests.

As others have mentioned it took many months for MTX to bring the RA symptoms under control, but when it did it was like being gifted with life.

Best wishes, Shug

Hello Kim, I also had too many problems with mtx. I got GERD. first time I took it I passed out. Didn't like food at all. Nausea, vomitting stomach pains and head aches just too mention few, I had them all. Now I am fine but it took 2 to 3 months to get rid of some symptoms.

somebody on the forum told me to take it on full stomach and drink lots of water. It made lot of difference on nausea, dizziness and vomitting. I still get stomach pains. May be ask ur doctor to go on injections to bypass the stomach. It will help u. My RA is going out of control so my doctor added sulphazides too.

Best Wishes to u and hope u will feel well soon.

Hi Kim, welcome! You have gotten such great advice I won't add anything but wanted to welcome you. I hope things turn around for you soon and I hope to see many more post from you. We all learn from, as well as support, one another.

Take care and good things are coming your way!

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