Hair Loss

[windchime]

Has anyone experienced any hair loss with just the predisone? Yesterday while combing and blow drying my hair I noticed about 3-4 times more hair coming out than normal. Could it just be the stress? Any ideas?

[Dirty Don]

If you've been on pred already for a while, then one would suspect the stress. And stress can be caused in an offhand way by pred in that it makes some manic and anxious while on it at first.

[Boonickel]

haha that's my natural stuff.

[windchime]

If you've been on pred already for a while, then one would suspect the stress. And stress can be caused in an offhand way by pred in that it makes some manic and anxious while on it at first.

I started 40 mg a day last week down to 30 mg starting today. Was on a 6 day dose pak the week before that. Not on any other WG drugs yet. Waiting for the second opinion to come in and the doc to get back in town.

In addition, I kind of expected to feel better by now (I'm an inpatient sort especially with illness). Although my breathing is getting better I still more or less feel like crap.

Of course there is stress. Not working, waiting for my short disability to kick in, which will only be 50% of my regular income. Not complaining though, better than nothing. Has anyone in the US been successful in getting Social Security Disability for this?

[annekat]

it could take some time to feel a lot better. Getting some real Wegs drugs might speed up the process, though pred alone can help a lot with symptoms. You need the real Wegs drugs to stop the disease in its tracks. If your breathing is getting better, that is a good sign.

I was successful at getting SS Disability for this, so I would go ahead and apply if I were you. You might want to wait for a current dx, though I realize you were dx'd in 1972. WG is on a list for special consideration for benefits, and I think your age will be in your favor, along with any extreme difficulties you are having. In my case, I hadn't paid a lot into the system so my benefit check is comparatively small, so I still have to drum up other income. You are allowed to work a limited amount and still collect. I maintain my pottery business for additional income. You can get income other places such as rentals, annuities, as long as they aren't work related;these and whatever assets you have don't count for SSD. For SSI, which low income disabled people get without having paid into it, assets and all kinds of income do count. If I understand it correctly.

[windchime]

I was successful at geting SS Disability for this, so I would go ahead and apply if I were you. You might want to wait for a current dx, though I realize you were dx'd in 1972. WG is on a list for special consideration for benefits, and I think your age will be in your favor, along with any extreme difficulties you [/QUOTE]

Thanks for the info. I'm currently just exploring all my possibilites. Getting my little ducklets in a nice orderly row. I'm also gathering as many of my medical records as I can. Old AF and VA records that can take forever to get. I hate waiting. Didn' t like waiting 9 months for a baby either. Lol Just a little of my frustration coming out. Been doing so much research so I can share it with my docs that my head is spinning.

Doctor update tomorrow but will change threads.

[annekat]

I understand the head-spinning. It took me months to have the energy to complete the application for SSD, and the local SS office kept bugging me to get it done. Everyday things, keeping track of finances, documentation of any kind, has become more overwhelming than ever since having WG. And to be doing research on the disease at the same time, to share with docs who may be ill-informed.... well, that would be a real head-spinner, all right. I hope you are getting plenty of rest in order to be able to deal with all this.

[brew22]

Niki did your hair come back?? Mine is getting so thin..

[Pete]

Niki did your hair come back?? Mine is getting so thin..

Are you taking folic acid? My rheumy Rxed 1 mg/day to combat hair loss as a possible side effect of mtx. My hair is a bit coarser, but I don't notice any thinning beyond what I associate with aging (I'm 68.).

[annekat]

Does folic acid work for hair thinning with CTX, too? I've only heard about it in relation to MTX. When I was on CTX, my hair thinned quite a bit. When I went off it, it started coming back. Since I've been on MTX, I've been taking folic acid and it has continued to come back. I was also under the impression that the folic acid with MTX was for other reasons besides hair loss, "to counteract the effects of the drug", but am not clear on what those reasons are. I'd be interested to know.