I am retired living in Florida US

[Nap1]

Have GCA and finished a bought of prednisone (3 years worth) and now developed GCA. On 40 mg and having trouble with sugar, pressure, infections In the eyes and huge muscle fatigue. Want to read others stories. That's it for the moment.

[DorsetLady PMRGCAuk volunteer]

Hello Nap1,

Welcome to this forum. Once you've had a look through at some of the posts that you think might help, please come back and ask any specific questions that you have and share any particular problems. There are lots of us who have had/still have GCA, who will do their best to help. Also those who have PMR suffer from many of the same problems, albeit they have not been on such high doses of Pred, they do have the same difficulties in regards to side effects and tapering the doses. Hope to hear more from you soon.

[Nap1 in reply to DorsetLady]

Thank you. Glad to have found the website.

[Celtic PMRGCAuk volunteer]

Nap, what rotten luck to succumb to GCA after having conquered PMR. I had a similar experience although the medics failed to diagnose my PMR until GCA arrived on the scene. I, too, started on the 40mg dose of Pred and it took me 5-6 years before both conditions went into remission, after a few flares along the way. However, I hope it might reassure you to know that those flares were PMR-related, not GCA - so with none of the severest GCA symptoms reappearing. Hopefully, you, too, will respond well to the initial dose and also will have a smooth journey to remission GCA-wise.

The side effects you mention are often experienced on such high doses as 40mg. You should be able to help with the sugar situation by cutting back on carbs which turn to sugar in our bodies. In the case of high blood pressure, you may find that restricting your salt intake will help. If it is high eye pressure that is causing a problem, then eye drops can help with that.

If you look at all the topics and pinned posts to the right of these messages, you will be able to gain more information and read others' experiences in their posts. Also, there is an informative book written by Kate Gilbert, 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. It is available from PMRGAuk and on Amazon, with all royalties from the sale being donated to the Charity. PMRGCAuk, pmrgcauk.com.

Keep in touch and I hope you feel better soon.

[Nap1]

Doing the carb thing. It works. But the drug cannot be helped. What do you do about your bones. Osteo? Our drugs here are unbelievably expensive. I just started on Actonel. If next bone density is bad have to go on Forteo which runs $2000 a month. This illness and cure is horrendous.

[Celtic PMRGCAuk volunteer]

Nap

"This illness and cure is horrendous!

The problem is that there is no "cure", steroids just damp down the inflammation that causes the pain until PMR and/or GCA go into remission. Until a friendlier drug is found, steroids are the best we've got, and without them many of us risk either being in wheelchairs or losing our eyesight, so they are both a blessing and a curse at the same time!

With regard to what to do about our bones, firstly if you haven't already been given a DEXA bone density scan, then do request one. If you are found to already have osteoporosis you will need treatment. Here in the UK, Forteo is not prescribed unless other drugs have caused unwanted side effects, and in many cases not until a fracture has occurred. However, if your density is found to be within the normal range now then it isn't a given that it will be affected by the steroids and thus you may not have a need for any bone protection drugs. However, it is recommended that we should take a calcium plus Vit D supplement whilst taking steroids. My bone density hardly changed at all after 5-6 years on steroids starting at 40mg, certainly not into a range that needed treatment. Due to an oversight on the part of both my GP and rheumy, I wasn't prescribed the usual calcium plus Vit D supplement either. However, I did ensure that throughout my steroid treatment, I included plenty of calcium in my diet by way of a daily 'live' yoghurt and oily fish several times a week. I also walked each day for weight-bearing exercise, in the early days sometimes only for 5-10 minutes but gradually building up to half an hour as pain allowed.

[cdenoncourt]

Hi Nap1,

Welcome to this forum. I have a lot in common with you. I am also retired and living in Florida. I also was diagnosed with PMR (in Nov. 2011), and with GCA (in August 2012). I also had an eye infection while on a high dose of prednisone.

I want to remind you that if you have Medicare for your health insurance, we are NOW in the open enrollment period that lets you add prescription drug coverage (called Medicare Part D). You only have until Dec. 7 to do this, then you must wait until Oct. 15, 2016 for your next chance.

If you anticipate needing expensive drugs like Forteo, you will want to have prescription drug coverage. You can find the options available to you by going to medicare.gov. and make sure that the "formulary" of any plan you select specifically includes Forteo, as well as your Actonel.

I echo Celtic's point that Forteo should only be prescribed for severe cases of osteoporosis, usually including a past fracture. Even the manufacturer says this and gives warnings of other dangerous side effects.

I have found this forum to be very helpful in providing information and support. I hope it will help you too.

[PamelAnneCT]

Welcome to the group.....I'm in the US as well. Forced into disability at least for now. Make sure to check into prescription coverage soon before it's over.....there are also many companies that have assistance programs. It's a full time job caring for ourselves, good luck!