GCA

[beringer]

Going on 2 years with GCA, on actemra to keep me off preds. All my labs are good but still don't feel like I did before GCA. I get worn out doing a load of laundry or trying to run the vacuum. Is that part for everyone? Don't want to whine but I have Our 6 yr old Great Granddaughter with us, I found her easy until I got ill, now it takes all I've got to care for her & she is a good little girl. Seems I just can't regain my energy. Anyone else still having problems even tho labs show your fine. Thank You ... Betty.

[optimist-ok]

Yes beringer, very tired & not much energy at all! I just had 2 Grandsons for a holiday, lovely company & we do quite a lot but it wears me out. I have to pace myself now & stop when necessary. A nuisance but at least we're still up & running (well almost!) I hope you manage to cope & can enjoy your Granddaughter.

[Celtic PMRGCAuk volunteer]

Betty, yes unfortunately the fatigue is part and parcel of most auto immune illnesses. Even though the blood results are good, it doesn't mean that GCA has actually gone into remission - the blood tests can sometimes lag behind and you can still have some lurking inflammation and consequently continuing fatigue. Even when GCA does go into remission, it can still take a good year for our bodies to get back to normal, after various hormones etc have been disrupted, plus those adrenal glands need to get really strong again if Actemra suppresses them in the same way as steroids. I do hope you have plenty of help looking after your great granddaughter - that can't be easy whilst coping with GCA.

[Polywotsit PMRGCAuk team member]

Hi there,

So many people like yourself who get the benefit from steroids then try to go on as though everything is normal. But it isn't. You still have the underlying illness and it does involve fatigue. Even doing light tasks are hard on the body. As carers we tend to give and give. But caring for a 6 year old is a big ask! Do share with your relatives that, just because the drugs are effective, it doesn't mean you are 'better'.

[cassey1879]

So glad to read this, just love this website, thought it was me, I am just so tired, does not matter if I get 10 hours sleep or 4. A down to 34 mgs trying it slower this time, as don't want to go on the Metotrxate or anything else. Started at 15 mg for PMR then biopsy positive for GCA and 60 on 12/1/15 got down eventually to 30 then 20 in 3 weeks was too soon back to 40 for 8 weeks, now trying just a mg. or so every couple weeks. Seems like it really does not matter how much am on, as far as being so tired or the amount of sleep or what I do. So good to know that I am not imagining it. Even started crying in store two times last week, For absolutely no reason, was scary. Hoping it is a reaction from the prednisone?

[Joyful13]

Hi cassey,

I appreciate the fatigue that you talk about even after 2 years. I started on 60mg Prednisone about 4 weeks ago for GCA, have probably had it for a long time. My rheumatologist is adding the Methotrexate slowly to see if we can decrease the Prednisone. I also have PMR.

My ESR and CRP just came back in the normal range! I haven't had a normal ESR in over 15-20 years. I know it's because of the high doses of Prednisone right now, as I still have jaw pain, and some headaches.

Has the Actemra worked well for you. I have so many side effects from the Prednisone.

I help out with our grandchildren a lot right now. They are 10 months and 4 years old. I love helping out, but I do really get exhausted. However, they do not live with me.

Do you have anyone else who helps with your great granddaughter, so you can get a respite at times. We all need a break from the intensive care that children require.

They bring so much joy, but the physical demands on our bodies are amazing.

I find my emotions run the gamut. Right now, I just don't handle a lot of good or bad stress. Tears are a blessing as they release the feelings we don't always understand.

It's just difficult when the tears flow in public places.

Do take care. You are in my thoughts.

t

[beringer in reply to Joyful13]

Thanks for responding,, The Actemra has caused no side effects & all my labs are good, I could not do preds, I was ready to give up the 2 months I was on them, Actemra is a blessing to Me. My Dr. Is the greatest. Dr. Barry Eibshultz in San Luis Obispo. So with him on my side I know I will make it through this.. As for Our Great Granddaughter, we have her most of the time, & as I said, she brings such pleasure to our lives. Today we are taking her to the fair, I'm sure I will come home dead tired but for her I will do it.. my Husband is on dialysis, so I look at this GCA -PMR as though " it could be worse" & do my best to move on... thanks all, Betty.

[evafel]

Actemra hides the inflammation and makes your tests look good even if they aren't