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CT01
11-25-2016, 09:13 AM
Hi,

A very dear friend of mine is suffering from Wegener's, he has been diagnosed about 5 months ago and has been taking treatment since then. He is in medicine taper down phase of the treatment. He has had very fluctuating test results since his treatment started, the result goes from big improvement to worst from one week to another. He began on very positive note but he is now losing hope to recover and after reading some of the articles about Wegener's online he feels nothing will stop it from relapsing within 2-5 years. He is only 26 years old. My heard breaks to see him in this state of uncertinity...

I have joined this forum to research on Wegener's for him. I cannot fight his battle but I could support with research work on alternate/ holistic medication to help his health. I would like to help him on step at a time...he is suffering from daily headaches. I read online that headache is one of the side effect of Prednisone. Could anyone help me if they know of any essential oil/ any way other than allopathic medicines to reduce/ treat these daily headaches?

Please help me. I will be indebted to you forever.

CT01

Pete
11-25-2016, 11:57 AM
Is he seeing a wegener's specialist? Meds (especially prednisone) generally aren't tapered until the disease is stable. See the Vasculitis Foundation's website for a list of specialists. If he doesn't live near any, his local doc can consult with one (often at no charge).

CT01
11-27-2016, 06:16 AM
Is he seeing a wegener's specialist? Meds (especially prednisone) generally aren't tapered until the disease is stable. See the Vasculitis Foundation's website for a list of specialists. If he doesn't live near any, his local doc can consult with one (often at no charge).


Hi Pete, thank you for your reply. Honestly he has stopped to discuss details with me ever since his test reports started to fluctuate. I know from him that doctors told him his symptoms should go away after Christmas but due to inconsistency in his test reports he has started to believe he has only 3-4 years of decent quality of life before symptoms will relapse. He is shutting me off due to his condition.

Its a good idea to check Vasulitis Foundation, I had also read it from one of the posts on the forum but while the bigger battle awaits I would like to get some help from the group on remedy for his daily headaches. I am sure his doctors have suggested him meds for headaches but I want to try and find some essential oil or alternate treatment for it. I will be very greatful if anyone could suggest me something we could use to sooth his daily headaches.


Thankyou
CT01

mishb
11-27-2016, 10:05 PM
Hi CT01

Your friend must be on something more than prednisone. My thoughts are that it is whatever else he is on, that is causing his headaches, unless he has tapered too fast from the pred. How much pred was he on, how long was he on it for, and what is he on now?

In most cases, it is not beneficial for someone so early into WG, to seek alternative therapies, unfortunately.

I take another medication called methotrexate and I find that it gives me a headache, but a couple of paracetamol and a small packet of salted chips/crisps, helps wonders.

In your friends case, his headaches could be caused by a sinus infection.

Without knowing his full WG history, it is not easy to say.

Please just let him know that there is light at the end of the tunnel. Many members have reached remission, and the younger ones have gone on to lead full lives.

CT01
11-28-2016, 06:07 AM
Hi CT01

Your friend must be on something more than prednisone. My thoughts are that it is whatever else he is on, that is causing his headaches, unless he has tapered too fast from the pred. How much pred was he on, how long was he on it for, and what is he on now?

In most cases, it is not beneficial for someone so early into WG, to seek alternative therapies, unfortunately.

I take another medication called methotrexate and I find that it gives me a headache, but a couple of paracetamol and a small packet of salted chips/crisps, helps wonders.

In your friends case, his headaches could be caused by a sinus infection.

Without knowing his full WG history, it is not easy to say.

Please just let him know that there is light at the end of the tunnel. Many members have reached remission, and the younger ones have gone on to lead full lives.

Hello Michelle,

Thank you for your reply.

You are correct I need to know his treatment history & details first. I guess I am so desperate to help him in any way possible I don't know where to start. But I see new light after reading your post. Could you please help me in preparing list of things I should find out from his ongoing treatment before I try to find alternate treatment for him (including non-allopathic treatment for daily headaches).

I agree it might be a bit early for alternate therapy at this stage but I would like to research and see if something could be used along with the usual Wegs treatment...

I will share your message with him.

I don't feel all alone & helpless after I joined the forum and after I have been talking with you all. This is great support group.

Thankyou :)
CT01

Alysia
12-01-2016, 06:19 AM
CT01 please invite your friend to join us here. We can help him with info and support.
No alternative medicine can heal wg. But one can get into remission with the treatment and lead almost normal life.
From your description I guess he taperd down the pred too fast; it causes crazy headaches and can also explain the change to worse test's results.
Anyway the best will be if he will come here himself. Tell him we are waiting for him.

CT01
12-04-2016, 07:15 AM
CT01 please invite your friend to join us here. We can help him with info and support.
No alternative medicine can heal wg. But one can get into remission with the treatment and lead almost normal life.
From your description I guess he taperd down the pred too fast; it causes crazy headaches and can also explain the change to worse test's results.
Anyway the best will be if he will come here himself. Tell him we are waiting for him.

Hello Alysia,

Thank you for the message. I am going to talk to him and encourage him to join this support group. This is extremely helpful group and I believe he will benefit a lot by joining the group.

Thankyou :)
CT01