Been a long time:

[Kathie28]

I haven't been on here in quite a while but it always comforting to know this site is here to look back on. I have been diagnosed with Wagner's now since 2011. I have really done quite well and went from problems with severe joint pain, sinuses, eye involvement, kidneys, and lung issues to only dealing with joint pain. While I am thrilled I have improved so much I can't help but wonder is there anything else that would bring down my inflammation levels. My Sed rate usually scores in the 60's which seeing when the whole process started I was off the scale is an improvement but I just can't seem to improve anymore in this area. I still take Imuran and Methotrexate. I have went off Predisone at this point as this started causing really severe side effects. I remained on a low 2.5 level for a long time but honestly noticed little change from being on 2.5 and being on nothing. Most of my pain really occurs in the later afternoons through the night time. I take my meds at night and usually wake up feeling quite well. Any thoughts of what else might bring down the level of inflammation?

[im so blessed]

Hi! You sound much like me as far as meds. What are your doses? I think im headed for rituxan for my tracheal stenosis. I am on 100mg of immuran and 12.5 weekly of methotrexate. It keeps my joint pain at bay. I know exactly what you mean with the timing of pain tho. I use to have so much pain i couldnt walk at night. Until morning it was gone tho...weird. I wish i could tell you what might help. Aleve really helped my pain but my dr says not to take it with mtx because of stomach bleeding. Do you have a good dr?

[mishb]

Great to hear from you Kathie and to see things are going well.

I wish I knew an answer to this one. Unfortunately it is the joint pain for me also.

[Kathie28]

We are pretty close on meds, im so blessed. I am taking 100 mg of imuran and 7 weekly on methotrexate. My doctor has offered to let me increase again on the methotrexate but I am hesitant. It causes me a lot of hair loss when I go above the 3 pills. I had rituxan 4 times in the start of my whole process and I have made huge gains. I do take Advil some right now due to having a heel spur and my doctor said it was ok for a while. I feel like I have overcome so much but how amazing it would be to have that sed rate drop for good. I do think my doctor does an amazing job. She always seems up to date on treatment and has several Wagner's patients. I know she had thought I would achieve a true remission but she doesn't really talk about that anymore. She just tells me I am doing great and I get the feeling this may be as good as it gets.

[Pete]

Hi Kathie.

You can minimize hair loss from methotrexate by taking folic acid. I'm taking 15 mg/wk of mtx and a daily 1 mg/day of folic acid. Talk to your doc...

[Kathie28]

Thanks Dirty Don. I do take two folic tablets daily but for some reason the hair continues to fall out if I take any larger dose of the medicine. I still have some loss now but it is manageable.

[Dirty Don]

Thanks Dirty Don. I do take two folic tablets daily but for some reason the hair continues to fall out if I take any larger dose of the medicine. I still have some loss now but it is manageable.

That was Pete, but try 3 pills of folic a day. That's what it took for me to end the hair loss. On top of that, the hair on the back of my head came in quite curly and lasted for about 6 mos. - I've never had a curl of a hair on my head!!! Also, folic acid is not technically a med, it's a vitamin, albeit a healthy dose of it. Best to you!

[annekat]

Hi, Kathie, glad to hear you are doing pretty well, or at least a lot better. Don't know what to say about the continued inflammation level, wish I could help there. Last time my Sed rate was that high I was in a moderate flare. Now it's about 25 but was as low as 16 a few months ago. There's always the chance some of the inflammation could be from an infection or something else. But if you have the joint pain... I haven't had any of that since being on pred, but wouldn't be surprised if it returns if I get down below 5mg. a day. Good you are off that, if the side effects were bad, but it's the only thing I can think of that would improve things, if it were me, besides possibly increasing the MTX. I take 15mg./wk of MTX and about 1000mcg of folic acid a day seems to keep me from losing much hair. I lost a lot more while on CTX and it is now growing back, although somewhat slowly. Best of luck to you, and keep us posted. Some on here may recommend an anti-inflammatory diet, and I have no argument with that, but don't know enough to steer you in any particular direction.

[Debbie C]

Hi Kathie,good to hear from you. I think the last time you were on is when you just moved into your new house..hows that going,If I remember right you had quite a bit of land.
As for your sed rate,that is pretty high,what does your doc think ? Maybe sense you are having so much joint pain, it is due to the inflammation and the number to be high.I wouldn't take too much ibruprofen if I was you the on mtx and ctx...not good.I know as bad is pred is ,it may help,even just a small dose. Have you tried eating certain fruits that are good for inflammation. I believe avacadoes are good also berries.Also try a little yoga..stretching the muscles might help the joints as well? Keep in touch

[Yvonnea]

Hi Kathie,
Great that you are doing so well. Have you tried a change of diet? I switched over to Paleo...cut out gluten etc...three years ago. Not a cure, but helped reduced inflammation and keep off the prednisone weight. Worth a shot.
Best of luck.
Yvonne