New to forum

[annihami]

Hello. I'm fairly new. Diagnosed April 2013 after blood tests. Had aches. Pain generally from neck . Down back and pelvis. Thought it was old age (62).been on 20mg Pred. Now 15mg. Aches seem to have gone. But getting bit of neck stiffness. Also have a feeling of 'tense' head. Had antibiotics couple of weeks ago for synus. Feels like my specs are too tight. They arent. I work for an optician. I also feel as though there's a lump in my throat. Gaining a pound a week! Wide awake ar silly hours during night. I also take A Acid weekly for the old bones. Reading bloggs and questions, I feel as though mine is a mild condition. Am I becoming paranoid folks. Just thought I'd run it by you. Keep well.

[DorsetLady PMRGCAuk volunteer]

Hi annihami, welcome. No you are not getting paranoid, just be aware of how things change. Were you diagnosed with PMR or GCA? If GCA, don't let your head pains progress too far without checking. The sleeplessness is a pain, but it does wear off, as do most of the other side effects, they are just horrible at the time. If you bruise a lot, Arnica cream is good. Just get as much info as you can, but don't be panicked by it. Not everybody gets everything bad! Keep in touch, and don't be frightened to ask what you might think is a silly question, it's not if you're worried by it! Good luck, Dorset Lady.

[annihami in reply to DorsetLady]

Hello,

It was PRM. Thanks. I do bruise easily! I have a great gp, and he is monitoring my dosage. Ann

[polkadotcom]

Welcome Annihami to the forum you would rather not be on. PMR classically hits the shoulder and pelvic areas, sometimes with a little diversion to other areas, that is the nature of the beast and it needs to be chained up with steroids!

I'm going to ask all the usual questions - why are you taking AA? Have you had a Dexa scan to prove you need it? It's not a drug to take lightly if there is no need for it and I would want the case proven for me to even consider it.

As you are now on the lower dose, perhaps you could ask your GP if you can stay there until the tense headache feeling passes? It may take a longer time than s/he would like, but GCA needs to be ruled out as far as possible before you reduce again. You could also google some neck exercises and stretches, but go carefully at first. I find some of the stretches really help.

If you are working for an optician I hope s/he is checking your eyes regularly, do ask him to help the minute you run into any other symptom of GCA or visual problems and/or headache. The 'lump in the throat' feeling could be due to tension too, I've had it on occasion.

Pred does upset sleep patterns, it is a listed side-effect. If you experience fatigue, that also can be due to Pred, but sometimes it is a symptom of PMR, so some get a double whammy with that.

I hope that you will be a textbook case and not need us here too much - it's everyone's wish to have it done and dusted in the minimum of time, so here's to you!

Regards and good wishes.

[annihami in reply to polkadotcom]

Hi, yes. I thought I was going loopy. The aches and pains seemed to do a circuit. Stop and then start again! I did have a dexa scan when I changed gps. I have an ongoing lung condition and he picked up something when I saw him for that. Sent me off and apparently Im at risk of osteoperosis. I also have ventolin, seretide inhalers,and a stomach protecter too!

But on the whole the pred seems to work. Our Optom is going to do some retinal photos for me too.

Thanks so much for taking the time to reply.

With my best wishes, Ann

[iforget]

I don't really have anything useful to add except a hello and welcome to the forum...sorry you had to join us but glad you found us...This board has helped me tremendously since my diagnosis - everyone has been so friendly and really helpful sharing their experiences and advice.

[annihami in reply to iforget]

Hello to you too.

Yes, the board is really helpful. My daughter suggested I check it out. She recently had a cancerous kidney removed and got such a lot of support from her forum. Will keep in touch.