Scared 😱

[JanieBaxter]

Hi I’m new on here 🙈recently diagnosed 4 weeks ago with pmr and have been doing a bit of reading and am now worrying myself sick that I will get gca which I hadn’t even heard of !no mention of it when diagnosed with pmr and now terrified by stories of vision loss 😢

[DorsetLady PMRGCAuk volunteer]

Hi Janie,

As I said in message don’t worry unduly, but just be aware of any eye issues, and if worried get them checked. You may find the Pred gives you slightly blurred vision, but that is something completely different.

Have a look at these posts

healthunlocked.com/pmrgcauk...

This is my take on partial sight loss.......just for info and to show it’s not so scary...

healthunlocked.com/pmrgcauk....

[piglette]

Hi Janie

The chances of you getting GCA are quite low. Even if you did get it you know the symptoms and could do something about it immediately which would mainly be contact the medics who would probably up your steroid dose to relief the symptoms. The people who tend to lose vision are those who have never heard of GCA before and so do not get given steroids in time.

[JanieBaxter]

Wow 2 replies at this late hour😍thank you so much and both sound positive so maybe I will manage some sleep tonight - so much I don’t know and so much to take in - I have had blurry vision today but didn’t know this could be Pred - so glad I came across this group after trolling the internet for days and getting myself so worked up 😩thank you so much x

[1Purplecrow in reply to JanieBaxter]

Hi Janie, as the earlier posts said, do not worry...you will be ok.

I discovered that one of the early effects of prednisone can be a heightened level of anxiety.... once you are aware that you may experience some anxiety, which it sounds you have...now you also know it will pass quickly, and you will be OK.

So, have a cup of warm milk, and snuggle with your favorite teddy for a bit...this will pass.

I am 4 years on this journey, and coming to the end of PMR, (I hope.) I and many others on this journey, are fine.

Kind regards, 🙏🏼 Jerri

[Hindags]

Please do not worry yourself unnecessarily. PMR can be a stand alone condition and is just that for most of us.

I too was worried at the start. Finally trusted myself to know if I were having any serious new symptoms. It helped me that the Rheumys I saw were upfront about GCA. They described what symptoms might be of concern and what to do if they developed.My inflammatory markers we're very high on diagnosis and I have a history of head pain so they might have been a bit concerned. I was offered a biopsy at the beginning but I declined it because of the high false negatives. After being on Pred for a while, the sensitivity of the biopsy gets even lower.

I still carry an emergency pack of 80mg of Pred and one 81mg aspirin, per their recommendation just in case.

I was diagnosed a year ago, started at 20mg, one hiccup at 14 when my markers started up but that was months ago. Doing s slow taper 9 to 8 now, normal blood levels and no signs of GCA that I can detect.

Please talk to your Doctor if you are still concerned. My understanding is that best practices includes giving patients diagnosed with PMR info about GCA, just in case.

Don't hesitate to ask here about any of your concerns. That is why we are here.

[GOOD_GRIEF]

It's right to be concerned. But scaring yourself isn't going to help anything. It actually just makes your condition worse. The cure for that is education.

There's lots of wisdom on this site about GCA. Keep reading. On the right side of the screen under the heading Topics you should see GCA Symptoms.click on the link and get to see 300+ posts on the subject. Keep in mind that like you, many of those asking questions are having a hard time and/or are afraid. Focus on the responses and don't let their fears make you afraid. The more you learn, the safer you'll be.

Chances of your PMR morphing into GCA are pretty small if your inflammation levels are kept under control with proper medication. The chances of losing your sight are even smaller. But that doesn't mean you can ignore the possibility. Once you face it and do your research, you, all by yourself, will diminish the possibilty to near zero, because you'll know what to do if the symptoms emerge.

Be aware of the warning signs of GCA, and don't delay seeking an assessment and treatment. If you have the warning signs, get to your doctor or to an emergency room immediately for assessment and treatment. If you're wrong, you've lost nothing. If you're right, you'll have saved your sight. And don't let anyone try to tell you otherwise, or tell you that you should be embarassed for being alarmed about your symptoms.

The logical thing to do when your body is doing something new and you don't like it is to go seek an expert.

Now go get some rest so you're full of energy tomorrow to start your learning project.

[enan-illuc]

Hi Janie,

I have both GCA and PMR and it is scary. But the good news is that you now know what to look for and if the PMR is handled well you can miss the GCA. You have to be aware what is happening with your body and react accordingly and fast. There is a tremendous amount of expertise and information on this forum and the people are great. Welcome to the club nobody wants to belong to.

Enan

[Marilyn1959]

Hi Janie,

I am six months into my PMR journey. Like you I was initially worried about GCA. I had a sight scare one month after PMR diagnosis and went to A&E following advice on this forum. Staff at A&E were great and very thorough. As GCA was ruled out they followed through at stroke unit just in case I had had a mini stroke. All tests were clear, however docs at hospital told me if it should happen again, I was not to hesitate in going back to A&E. I felt very reassured.

I suspect I panicked because, like you, I was scared about the 'Unknown' possibilities at that time. However, having had my A&E experience, I realise that nobody thought any the less of me for the false alarm. So my advice from lessons learnt - go with the flow, try not to focus on worse case scenario, and if you are at all concerned that you may have GCA symptoms seek immediate medical attention. Forearmed is forewarned.

As you progress on your journey hopefully your anxiety about GCA will decrease overtime as mine has.

Best wishes

Marilyn.

[Sunnyd7]

Hi JanieBaxter:

This is a great forum with a lot of great advice. I too worried about GCA, but after reading this forum I did find some peace. Not everyone who has PMR gets GCA. I have found out so much information reading this forum and everyone here is helpful and supportive.

The best thing you can do (in my opinion) is educate your self. There is a wonderful book available on Amazon.com amazon.com/Polymyalgia-Rheu...

It is a well written book that really helped me understand PMR better. Everyone responds to PMR differently. How much Prednisone people start with and continue to take differs.

You will find great support here. I wish you the best. Try not to worry.

[Pym1]

I was just going to say ‘try not to stress, it will make it worse’, but I see someone’s already said that. I started to worry about a ‘growth’ that seemed to be coming on the top of my spine. Just in case that happens, don’t worry. I learned from this amazing site that it’s nick-named ‘buffalo hump’ and is common with Pred.

Have a relaxing Christmas. 😂😂

Pym1

[Hidden]

I was a bit freaked as PMR student when my vision went really blurry. I seemed to have permanent headache from stress of it all. I went to walk in and they reassured me. I eventually decided after reading responses on this forum, including ones going back years, that I needed to just relax into it all and stop my catastrophic thinking. The headaches eased and the blurry vision reduced as pred came down. If, and it is If, you get GCA symptoms at least you will know exactly what to do. At present rest and relaxation will help you start to recover with the help of pred. 🌻

[JanieBaxter in reply to Hidden]

Thank you so much 😊

[PMRpro Ambassador]

Only 1 in 6 people with PMR go on to show signs of GCA - so it isn't that common and not something to panic about but simply be aware of so you don't ignore any signs.

If you aren't sure about something ask - there are really only a couple of hours where there is no-one about as there are night owls and early risers in Europe, the USA and Australia/NZ!

Just one bit of advice: if you want a quicker response always start a new thread, don't ask a new question in the middle of a thread, fewer people will see it.