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

[renidrag]

I take magnesium as a supplement, works for me. Like you inflammation up but not flaring, went the pred route, gained weight, stopped pred.
Dale

P.S. not changing avatar till all snow is gone, probably end of May.

[annekat]

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 I am not on any particular diet but am aware of what things will cause problems for me if I eat too many of them. These include gluten, simple carbohydrates, dairy, and sugar. Sugar is by far the worst and can definitely make my Wegs symptoms worse within a short time if I overdo it. The others, I don't notice as much unless I fall back on them too much for convenience, when I don't take the time to prepare better meals. I do feel better when I eat more veggies, quality proteins, and the higher quality grains, and less of the potentially inflammatory stuff.

[Pete]

P.S. not changing avatar till all snow is gone, probably end of May.

Can you see any grass yet??

[drz]

My sed rate and CRP always increase with an infection. Taking an antibiotic sometimes helps reduce inflammation cause by infections. We Weggies are prone to chronic infections. How is the WBC?

[drz]

I take magnesium as a supplement, works for me. Like you inflammation up but not flaring, went the pred route, gained weight, stopped pred.
Dale

P.S. not changing avatar till all snow is gone, probably end of May.

Our snow has been gone several times so far and is gone now but more might come tonight again. We usually don't get much snow after Mother's Day and fishing opening the second weekend of May.