CHA PAR are back..

[beringer]

I have been in remission for 15 months & now it's back.. My Husband passed away in Jan, within 2 weeks I started feeling like I had the flu & progressively felt worse but no real symptoms of anything going on. Finally I got so weak it took all I had to get from room to room, then My scalp started to hurt so I got My monthly labs done. Both the sed rate & CPR were very hi, Dr called & started My Actemra infusions again, by the next day I felt so much better. I took 20 mg preds for 3 days, once Actemra started, I stopped the preds... by My next treatment I will be feeling great again.. I love Actemra!!! Don't know how long Dr. Will keep Me on the infusion, I really never want to go thru this again...

[BirmLiz]

Hi beringer,

Sorry to hear of your loss and the onset of PMR again. I've been off steroids since the beginning of December and any pains in the shoulders or aches at the tops of my legs and I start to pray. I also have a stash of pred 'just in case'. This is such a frightening illness and I think we're all stronger than we believe as we suffer through it.

Take care and I hope you continue to improve.

[katkawon in reply to BirmLiz]

Like you I stopped pred in February. I again have pain in my thighs,neck,shoulders. Nothing I can't tolerate at this time. Fingers crossed I hope you feel better.

[Hindags]

So sorry to hear of your loss and of your PMR/GCA flare. Hope the course of treatment continues smoothly. How long were you treated with Actemra last time? I didn't think it was regularly available where I live, the USA, for the treatment of PMR. I would be very interested in learning about your experience. I understand that this might not be the time for sharing of course. Now is for focusing on yourself.

[beringer in reply to Hindags]

When I wss first diagnosed with GCAPMR I was on 20 mg preds & double dose Actemra, weaned off press in 2 months & continued Actemra for 13 months. Now I start all over!! I'm from Atascadero California. Half way between Los Angeles & San Francisco. Called central coast..

[Hindags in reply to beringer]

I'm also from CA. Menlo Park, half way between San Jose and San Francisco. Lol. Neighbors. I drive between my home and LA fairly frequently, or at least I did e PMR was diagnosed last Dec. Hope to be back behind the wheel for a road trip before too long.

Wouldn't it be lovely to believe that the inherent dysregulation involving PMR would fix itself and not leave us vulnerable to these stresses of life.

Just was reading about LDN, low dose naltrexone, that was mentioned in another discussion again today. Interesting. Maybe something like LDN could be the missing piece in treatment.

If your MD was open to treating you with Actemra, perhaps he knows about LDN.

[Celtic PMRGCAuk volunteer]

beringer, I'm so sorry to hear about your husband's passing. A very stressful time for you and so frustrating that PMR/GCA has returned on top of everything. I'm so pleased to hear that you are having a good response to the Actemra with rapid relief in your pain and I do hope you will continue to do well. Hopefully, as well as your friends on here, you have some good family and friends around for support and company too.

[SheffieldJane]

Bless you! I think you have a lovely positive attitude, I hope you will beat this disease quickly. Let us know how you get on. I am sorry that you have lost your husband. I hope you have supportive people around you. I will be thinking of you especially when I start to feel sorry for myself.

[PMRpro Ambassador]

I'm so sorry to hear of your loss - no wonder you have had a relapse.

Bad news/good news - hope the Actemra works well again.

[Jackoh]

So sorry to hear about your husband. Trust that treatment you are having will soon start to resolve things. X Jackie

[katkawon]

So very sorry for your loss. Hope you continue to do well. I believe stress can induce a relapse of all autoimmune diseases. Take care.

[Cinka]

Special thoughts and prayers at this difficult​ time, beringer and hope you will soon be back on track for optimum health.. take care. 💜

[DorsetLady PMRGCAuk volunteer]

Hi beringer, ,

so sorry to hear about your husband, thinking if you through a very difficult time and stressful time.

Do hope you feel better GCA wise soon.

[jwb43]

Can't get the Acetemra here in the states. Does it have less side effects than prednisone

[PMRpro Ambassador in reply to jwb43]

Of course you can get Actemra/tocilizumab in the USA - there are several people on the forums who are on it. It was the subject of a clinical trial which reported last autumn and is likely to be approved generally for GCA in the relatively near future. It is already being used for rheumatoid arthritis and in the USA is already being used by some rheumies for GCA. There are even pilot studies for it in PMR.

It isn't in general use yet and getting reimbursement may still be problematic - but there is no reason not to ask your rheumatologist. It isn't cheap though! It has different side effects - I'm on pred, I don't have side effects at present, so I can't say it has less.