Sounds like you are doing great Autumn. It is always a good sign when our doctors feel we can go longer between appointments. Means we are well under control!

I simply love this group here. Everyone is so helpful and people turn around and support others without a thought. You've help many people as well Autumn. Thanks for sharing and being part of our community.

Congrats on your progress!

Thank you Lexis. You have been great from the beginning and thank you. I should be off the Pred by November but have to take the Azathioprine for longer. The Lung Specialist says its 'key ' to keeping the JO-1suppressed. No clinical signs of anything there so far. I know I am fortunate. Autumm

Hi Autumn, This is terrific news from the lung doctor and the rheumy!! It is great to hear that you are doing well! You obviously have an excellent team of doctors that were able to steer you forward correctly.

I know your concentration will probably be toward tapering off the steroid. Everything is such a delicate balancing act between taming the disease and coordinating the right combination of meds.

Thank you for your wonderful support and words of encouragement. You have always been very helpful to me and everyone here. I always enjoy talking with you! Congratulations on the excellent reports, and it is an encouragement for all of us!

Thank you Trpt for your kind words. You too have been here for me from the beginning. How are you doing with the Cell cept. (My Ipad refuses to take the correct spelling for your drug) I have come to accept that after he Pred deals with the inflammation these secondary drugs keep us well. Autumm

Congratulations, autumm. This is wonderful news, and I am very happy for you. Sometimes at the beginning of our myositis journey, we don't see the proverbial "light at the end of the tunnel." But then one day things turn around, and we begin to improve. You seem to have good, knowledgeable doctors. I hope that they will continue to monitor your health, and that you will continue to improve. Best wishes to you for a better tomorrow.

So happy for you Autumm, Longer between appts is GREAT as long as you can get in if things take a turn... i am ready for 6 week or 8 week labs but with IVIG it is every month... That part i don't like.

We all try to be here for each other, so glad you are on the mend, and feeling good.

All the best to you, shawna

Hi Nanny. There from the start and thank you. You are right. My medical team at Guys Hospital have been wonderful and are very pleased to see me so well. I was so lucky to have them.Autumm

Hi Shawna and thank you. I follow your advice here and elsewhere and you sure know what your doing. The team here in London have an emergency helpline. If I am going down I call it, someone comes back to me and I am usually seen by my Rheumatologist that day, he will usually call himself and decide. The other way is yo call his secretary direct and she will speak to him, so they have that covered and he is very keen to hit anything hard and fast before it becomes a problem.Sutumm

Hey Autumn, I am doing fine at this point on the cellcept generic. I am only taking one pill a day now. I will move up to two pills next week if things continue on a good path. My doctor would like me on four pills daily.

The last time I took the med, I had a bad reaction. My ears had pain. I felt like I would pass out a lot and my BP dropped severely. I thought about the experience carefully. I was only on 5mg of prednisone at the time of the bad reaction. I think my body felt like I was "sick" and it was almost like an adrenal crisis. I started to see endocrine doctors and went through wondering if I was insufficient with the adrenals. My adrenal tests came back normal. I stopped the cellcept, but the bad ear pain and low BP did continue periodically after stopping the drug. I realized maybe something coincidently was going on in my body that just started at the same time I was trying a new drug.

I am now on 7mg of prednisone which is more than what the body produces in cortisol. I can get sick on 7mg of prednisone and not have an adrenal crisis. I still have the ear pains and low BP periodically which makes me think it may be kidneys, intestine issues, or autoimmune ear problems. I know that I can not blame the low BP or ear pain on the cellcept generic, so I am slowly trying the drug again.

Never a dull moment! Thanks for asking.

Hi Trpt. Good you are getting on well. I was started on very low doses of Azathioprine and slowly moved up. It was stopped twice because my labs were off and restarted after two weeks. The Rheumatologist here told me this was all ok and normal for getting the dose right. I stayed with it and it worked out fine in the end but its a worry at the time. I am convinced that when you get the dosage right in six months time you will feel so much better and maybe start to taper again. Do let me know how it goes. Best wishes. Autumm

Autum, i am so glad you have a way to contact the team and get in to see someone quickly. With our disease i think this is essential...

All the best to you.
Shawna

Autumn it is posts like yours that keep us positive when things are not going in the right direction,Congratulations on your great report! you are doing so well keep it up,I am so happy for you.You have always helped and given advise you respond and always give best wishes,it is a blessing to share the tough,hard and Happy times with you.
Stay Well,Safe and Happy.
Best Wishes Kind Regards Maggie