Just been diagnosed

[Poppylop]

Hi everyone, I have just had my results of my blood tests, I definitely have pmr, but the doctor also thinks I have gca too as I have been having headaches around my temple area and also scalp tenderness, and one of the tests came back high, I think she said 60, I've got to start taking 8 steroids a day starting tonight also vitamin d and calcium, she has also given me another tablet that I can't remember the name of at the moment that I have to take once a week. I feel so fed up, I came home and burst into tears, I've got to have a scan of my head and also possibly biopsies of my temporal arteries, I have to say I'm quite worried about it all 😕

[scats]

Everyone here will know how you feel. It is very scary at first but coming here will give you the knowledge you need to regain control, as much as is possible. Hang on in there and one of the experts will be along soon. If you fear GCA read Dorsetlady's pinned post on the right of this page.

[Mai45]

Poppylop, please don’t let the shock overwhelm you. If you have GCA it’s very positive that your doctor has diagnosed it. Steroids are not the end of the world, far from it. You won’t be on a high dose forever, and if you think about the alternative, GCA untreated could be the end of your sight.

Take a deep breath...

You have come to a place where there will always be someone to listen, and more importantly there will always be someone who has gone down that path ahead of you, and can talk things over with you.

I only have PMR but I’ve learned a lot about GCA just from reading Dorset Lady’s posts. So will you. Best wishes x

[DorsetLady PMRGCAuk volunteer]

Hi,

When you feel able to have a read if this - it might be a bit daunting to start with, but it will give you a view from a patient’s point of view - you might need to read it a couple of times for it to sink in -

- healthunlocked.com/pmrgcauk...

We are all a bit frightened at the beginning - PMR and GCA are not illnesses that are known about generally - so we feel isolated - and don’t know where to turn for help. Well you’ve come to the right place - we understand and will help as much as we can - albeit from afar!

Feel free to ask any questions, anytime, there is always someone who will answer you - if only to tell you you are not alone!

The other tablet is Alendronic Acid.

Take care. And don’t worry too much - you have now been diagnosed and are being treated.

[piglette]

Poppylop I am so sorry you have been diagnosed with PMR and possibly GCA. It is life changing but there can be ups as well as downs. It is definitely a new experience although I am sure you could do without it. I assume you have been given 8 x 5mg tablets ie 40mg this is higher than for PMR because they suspect GCA. Is the other tablet Methotrexate? If so it is supposed to help you reduce the steroids more easily over time. Biopsies often come out negative, particularly if you are already taking steroids or they happen to take the wrong bit for the biopsy! Sounds as though you have a sensible doctor which is good. Vit D and calcium are recommended. Also a Dexascan to check your bone density. I find it useful getting copies of my test results as well, so I can go back and check things which can often help the doctors as my doctors seems hopeless at looking them up.

I think you will find being able to talk to people on this forum will help a lot as we have all been through the same ups and downs, so you are not alone. I think after taking the steroids, if you are like me, a miracle happens and the pain is greatly reduced if not totally gone away.

[Hidden]

Hi poppylop, a good cry is warranted in the circumstances. It will partially be relief even if it's buried deep. Take a while to let it sink in and remember the good part, compared to fibro, is there is a treatment that can help manage pain more effectively. You will have good days and bad days, but as others have said there's nearly always someone around to answer your questions or just to use as a sounding board. Take it easy and be kind to yourself. 🌻

[Yellowbluebell]

I burst into tears as well but i was so relieved that all my symptoms actually had a name at last and a solution. Being diagnosed is a shock but believe me when you are taking the steroids and your pain decreases you will start to feel better. There is always one of us about to help you or just to listen to you rant about it all. Read.what our fantastic dorsetlady has sent to you. It will help.you understand it all. Kepp in touch. YBB

[cranberryt in reply to Yellowbluebell]

This was me as well! I was so glad there was an answer to my pain! And a solution, versus something else that doesn’t really have a treatment or never has the chance to be in remission.

[Yellowbluebell in reply to cranberryt]

Unfortunately for a lot of forum members their diagnosis can take years. My tears were of relief that it had a name. Even if i hadn't heard of it!!

[alvertta]

I cried right after my biopsy. It hurt and the reality of the GCA hit me hard. 10 months later I have a handle on the meds, the doctors, what I need to do. You will get there. 👏🏼👏🏼. GCA. diagnosed in October 2018.

[Marilyn1959]

Hi Poppylop. I really empathise along with the others within this community. I am glad you have found this site so early on your PMR/GCA journey as you will now always have the Community's support emotionally; as well as learn how to question and in doing so gain greater control of your treatment through the knowledge you will gain from members both individually and collectively. You will have someone by your side, day or night, through thick and thin. Welcome.

You will no doubt have questions, worries/ concerns, highs and lows along your journey. Whatever the case remember that a problem shared is a problem solved. We also share good news PMR/GCA related stories which raise the spirit and morale!

For now be reassured you are on the path to recovery. Best wishes

[SnazzyD]

Hello, I know it’s horrible and overwhelming isn’t it? But it does get better and your body gets a bit more used to the Pred which does hype you up which makes it hard to be cool, calm and collected. You’re on the right treatment so settle down if you can and start reading. If you’re freaking out or have a question or a 100, give us all a shout because you can bet someone’s been there.

I would perhaps discuss the benefit of the biopsy because it can give false negative results often enough to make it of debatable use, especially if you have already been on Pred. They often like to do it because IF it is positive you know it really is. Mine was negative but they still had to treat me the same because of my symptoms; it made no difference to my management.

[1643]

Hello, I have also just been diagnosed with PMR right now after pain for many months. I am also overwhelmed and scared and feel as if nothing will ever be the same. I m (I like to think!) a very young 55 so the fact that I have a long term (hopefully not life long) condition was a real shock. I hope you are able to find the reassurance and hope that you need here, which I hope for as well. Hugs. x

[PMRCanada in reply to 1643]

I was 55 at diagnosis too, and sad/angry that I developed PMR. Fast forward 1.5 years and I have learned to adjust and accept my condition. Most folks don’t have this for a lifetime, so I hang on to those odds that give me hope.

It is a roller coaster of emotions at the beginning though.

[cranberryt]

Read as much as you can so you are informed. Hopefully you have a knowledgeable dr managing your treatment. From what you have already said, it sounds promising. Arming yourself with knowledge of the disease and the tapering plans will help you feel more comfortable with your treatment and managing your symptoms. The good news is that the steroids should have you feeling so much better very soon which also helps confirm the diagnosis. Also keep in mind as you feel better that the steroids are controlling your pain but you still have the underlying disease so be gentle with yourself. Slow down and try to rest as much as you can. Even when you start feeling better you may not be able to do as much or be as active. It’s also helpful to manage your stress and stress can certainly cause flare ups. And try to be thankful as gratitude can help with the stress as well. I am thankful for the helpful people here and for the steroids which have given me my life back! Glad you found us!

[Choco-Holic]

Hi poppylop, all that you are feeling is absolutely normal. It’s totally overwhelming at first but with the support from this group and acceptance of the conditions you’ll get there. Don’t be too afraid, we all understand what you’re going through. I was diagnosed with PMR then 5 weeks later GCA. ESR was 118 and CRP157 so pretty high. I had the biopsy, which is nothing to be too scared about, took about 20 minutes and a neat little scar at side of ear (it was a false negative due to the fact that I’d been on prednisolone for a few weeks) however based on all other symptoms GCA was diagnosed. I later had the ultrasound scan which was reassuring that the inflammation in arteries had gone and then they started reducing my prednisolone down. It’s all a means to an end in your recovery (albeit slowly slowly). You may have other tests for your bone density etc but at least you know that everything is being done to give you the best and safest chance of recovering. Keep in touch as there are so many good people on here to help, and to tell you if perhaps you’re going wrong, but it’s all good support and information. Take care and keep in touch x

[Poppylop in reply to Choco-Holic]

Hi choco-holic, were you put out for the biopsies or do they do it under local , hate the thought of being awake while having it done, I had a benign tumour removed from my nipple a couple of years ago under a local, it just freaks me out thinking I'm awake while they are cutting me x

[Choco-Holic in reply to Poppylop]

No, I was done at local hospital and only in for just over an hour in total. The surgeon explained the procedure and she just froze the area she was working on. I just chatted as she was doing it but some people I guess take an iPod and listen to music. Think it’s better for recovery than general anaesthetic x

[Marijo1951]

As somebody who was in exactly the same position as you just over two years ago, I can thoroughly sympathise with you. Again like you, I found this forum almost immediately after I was diagnosed and I am so glad for it. Read it regularly and use it to ask a question or make a comment whenever you want. You'll soon have the impression that only kind, supportive and knowledgeable people get PMR and GCA.

[PMRCanada]

Welcome to the forum Poppylop. In the early days of diagnosis it can be quite disheartening and scary. My emotions were all over the place in the beginning. With the help of these folks I became more informed about my condition (PMR), which in turn helped me stay calm and focused on what I could do to combat the condition and long-term pred use.

You mention you started on “8 pred daily”..... did you mean 80mg or 8mg? Relief of symptoms taking pred will likely be a relief and help you moving forward. Adjustments to lifestyle may have to be made, but I believe it won’t be forever, rather temporary while the condition is active.

We are here for you if you have questions and/or need support. You are not alone in this.

[Poppylop in reply to PMRCanada]

Hi PMRCanada, I have to take 8 5mg tablets, 40mg in total, not feeling too good today ,I have a very upset tummy and feeling a bit sick