So thankful that I have found this group. I have been reading the information and learning so much although it feels quite scary and overwhelming. I have had PMR since the end of August and been on Prednisone since September 26. I have been given some vague information about dose of Prednisone and tapering by my GP but it has not been detailed or particularly successful. What I have found on here so far has been a lot more helpful. I don’t have an appointment with a rheumatologist until the end of March next year, and that is paying to go privately! Apparently, it is not even worth trying to go through the public health system. Hence, that is why I feel abandoned. Anyway, I was started on 40 mg then tapered down to 20 mg, then 15 mg over the space of 2-3 weeks initially which just resulted in ramping up of pain agin. So I went back up to 20 , which proved to not be enough, then up to 25 again. I have now started to taper again and been on22.5 for just over 2 weeks and wondering what I should do next? Does anyone have advice on size of tapers and how long between reductions? From what I’ve been reading the tapers need to be very small and well spaced apart once I drop below about 15 mg? I am also quite anxious about the possibility of GCA. My medical history is that I have suffered from sudden partial loss of vision in both eyes in the past, left eye at age 14 and a more severe episode in the right eye at age 22. I have never had a confirmed diagnosis for this but I’m scared that there is some connection. Even if there is no connection, I want to protect the sight I have left. I do have some pain behind my ears. I wear glasses and I’m finding that it is frequently uncomfortable but not severe pain. The rheumatologist I will be seeing next year did organise an ultrasound 2 weeks ago of my temporal arteries and the arteries at the front of my chest. These were clear and because my inflammatory markers were normal, he thinks there is a very low possibility of GCA. I want to be able to let go of my anxiety around it but I’m finding it difficult. Any advice that anyone can give me would be much appreciated.
New to PMR and feeling a little abandoned. How fa... - PMRGCAuk
New to PMR and feeling a little abandoned. How fast should I taper to begin with? Worried about GCA.
Hi Jae9,
Others with more knowledge will be along shortly but I just want to reassure you that all of us here have been in your position at one time or another.
When you're first diagnosed it can be so overwhelming with so much to consider and learn about. Every new ache or pain can feel alarming, and anxiety levels can quickly rise.
There are things you'll need to consider and maybe a few changes you'll need to make to your lifestyle habits but I promise you that as time goes on, you will begin to feel like you're regaining some control again and worries and concerns will lessen.
One of the ways to best facilitate this is to learn as much as possible about both your condition and your medications. This will enable you to make better judgements & therefore make better choices to meet your own personal needs.
We're all sharing the same diagnoses but with individual & varied manifestations.
This forum is a reliable and trustworthy source of advice, support, knowledge & guidance and will hopefully reassure you as much as it has (and still does) myself.
At the moment you're probably feeling quite scared, apprehensive, anxious and overwhelmed, but as you begin to become more familiar with the 'patterns' of your own PMR experience and discover ways of remedying any issues that arise, many of those feelings will begin to diminish.
Just know that there is life after a PMR/GCA diagnosis but it may involve a few 'tweaks'..... and for many people it will turn out to be not half as bad as was probably expected.
Try not to worry too much. You will be okay.
Wishing you all the best.
Hi and welcome,
General tapering -
On a monthly basis is our preferred and tried and tested method - and at higher doses [GCA] you may be able to do bigger steps down.. but from below 25mg I would suggest 2.5mg steps to 15mg then 1mg to 10mg.. after that 1mg every 4-8 weeks. But all on the proviso that you feel okay at each dose before you drop down.
Your situation -
GP was obviously unsure what you had as 40mg is a high starting dose for PMR - which is may be why nothing showed up on ultrasound - and markers were ‘normal’ - that just shows Pred had reduced inflammation, not that necessarily that you don’t have GCA.
The pain behind ears could be a sign of GCA - but many do complain that their spectacles do seem feel a bit ‘tight’.
On the subject of eyes, and I fully appreciate your concerns - I’m hoping you have visited your local option/optometrist and had a full eye check stating you are worried about GCA. If not, please do.. Not sure where you live in NZ but if on South Island - my daughter knows a couple of excellent Specsavers contacts - Christchurch and Ashburton..
Here are a couple of NZ links for you to look at if you haven’t already-
bpac.org.nz/bpj/2013/june/a...
And this is my introductory post -
healthunlocked.com/pmrgcauk...
Now you have found us, hopefully you will not feel so abandoned- and although the majority of us are in a different time zone, there is always someone around.. so you will get a reply - and hopefully reassurance.
All the best 🌸
Oh wow, thanks so much for all the useful advice. I will definitely book in to see my optometrist asap - I’m in the North Island but thanks for the offer to recommend one. And the advice on the tapering is so helpful. I feel less confused and uncertain about what to do next now. I will definitely read the links you have sent too. Off to bed now. Thanks again.
You’re very welcome…
Hi and welcome - gosh, the system is in a worse state in NZ than the UK by the sound of it. You would get a private appointment sooner than that in the UK!!
Kendrew and DL have already covered a lot - and you are already overwhelmed so I won't add to it except to say if you are scared or in doubt about anything, ask. There is usually someone around but you will only have to wait until the UK gets up! Don't panic you haven't been heard - DL and I read every post within 24 hours usually.
It is very unlikely that your amaurosis fugax episodes in the past were connected to the PMR but who knows. Is the discomfort behind your ears at the top of the sternocleidomastoid muscle? Do you have any neck discomfort?
kenhub.com/en/library/anato...
Do you also have discomfort where it attaches to the collarbones? These are not uncommon positions for PMR to affect and the inflammation can be very uncomfortable.
The health system here is indeed in bad shape. 😢. Thanks so much for the reassuring and extremely informative reply. I think you have nailed it with the sternocleidomastoid muscle involvement! I do have pain at the top of it behind my ears, some pain in the neck and this weird pain that settles on my collarbone area!
Yup - SCM woes I'd suspect. SnazzyD is a font of knowledge there.
What we aim for here is reassurance - we can't replace doctors but we can tell you about a lot of things they probably don't know!
I am already feeling my anxiety levels starting to reduce with the support and advice I am receiving from this group. It has been such a rollercoaster. A sudden huge change in lifestyle and overnight feeling like I had aged at least 20 years. On top of that, the almost complete lack of understanding of what was happening to me and the future prognosis, combined with extreme lack of sleep from the Prednisone, I have to say, I was a bit of mess. I really appreciate everyone’s input and such generous sharing of information and expertise. Things have improved and will improve further, I know, although I am not naive enough to think there won’t be bumps along the way. Thanks again.
The sternokleidomastoid muscle joins on at the collarbone. When you have worries of GCA hovering about, it is essential to keep this muscle in good shape because if it is upset, it can mimic some of the symptoms of GCA.
healthline.com/health/stern...
this video shows what it does and where it lies which explains a lot.
Can’t add a lot,will let the WISE ONES on here do that,all I can say is that you will always be listened to on this forum,you will get reassurance,sympathy if needed and never made to feel stupid or silly about any concerns you might have.Stay close!xx💐😜.
❤️
Hi Jae9, welcome to the forum, nothing at this time I can add to the advice/information already given. Just to reiterate that there is usually someone around to listen/help/advise/suggest and no question will ever be regarded as daft or stupid.
Hi Jae9, welcome to this lovely supportive forum. I have nothing to add except to say with all the information and knowledge on here you will get through. Wishing you well and looking forward to seeing how you get on.
Hi. I'm from New Zealand too but odly was diagnosed in the UK whilst on holiday. You'll get lots of useful help here, probably more than you'll find in NZ. Anyway, you are not alone. I started on 40mg prednisone and have had all sorts of issues. It's a horrible disease and prednisone is nearly as bad. But I'm down to 6.5mg now after 14 months which is so much easier. I'm tapering now at half a mg per month. I have about a week of weird pain and tiredness each time I taper as my body adjusts I guess. It's best to cut carbohydrates with PMR because you can be provoked into diabetes. Also you should get something from the doctor to protect your bones (PMR can cause osteoporosis). I have weekly risedronate sodium. Good luck!
Hi, nice to hear from you and to hear of your success in tapering and how much better you feel on a lower dose of Prednisone. I agree, the Prednisone is hideous, but unfortunately necessary… I have already reduced carbohydrates, which just happened naturally before I knew I needed to. I lost my appetite completely to begin with and it it still hasn’t fully recovered. I will talk to the GP about bone protection. I have ordered some vitamin D3 with Calcium Citrate tablets, which will hopefully be enough. I don’t fancy my chances of being able to get a bone scan to check bone density. I’m feeling very disillusioned with our health system.
Hi, sorry to hear about your troubles. I'll leave advice to those who know far more than me but just wanted to say that I think most of us felt exactly the same - the shock of one week feeling completely normal and then virtually overnight you're suddenly not and have this horrible illness which appears to have come out of nowhere! Also it would be so much easier to cope with mentally if there wasn't the underlying worry of GCA lurking in the background! That's how I feel anyway and I think a lot of others may feel the same. I hope you'll feel better now knowing that ladies like PMRPro and Dorset Lady are there with brilliant and quick advice. Good Luck.x
Hi Jae9
I am just passing the 2nd year anniversary of my original diagnosis of PMR at age 65. Thank goodness my GP knew exactly what I had and I got started on the prednisone quickly. After that however getting more specific information and answers to my many many questions was extremely difficult which absolutely causes a lot of stress and anxiety. Finding this site is going to end up being one of the best things you could possibly have done! The experts here and all the people walking through this journey will help pick you up every time you are down and share their experience in order to lighten your load. Hang in there because we are all listening!👍🤗
Much of the advice you get in NZ is... not good. Ask questions here and taper slowly as you need. I had to have Zopiclone to sleep for a year as I had terrible insomnia. That caused memory problems so I stoped it and now have 40mg Nortriptyline at night which is to help with nerve pain. Seems to help me reduce the prednisone. Again... good luck and stay strong.
Welcome and you are in the best place for help. This forum is my daily go to for help, advice, support and hearing how others are feeling/managing. I will leave replying to your questions to those much better placed, but good luck with your PMR journey.
Just to say welcome here Jae9. Best advice already given. Just to reassure you, I have both GCA and PMR. Now in my third year and down to 1.25mg of pred. daily. It has completely wrecked my physical activity but not my writing and interest in things. There is hope always and improvement is possible.
Welcome to the forum! My only advice right now is to not be surprised by the ups and downs with the tapering process. Some here have it go smoothly, but for some of us it is a rollercoaster, but eventually heads downward.
You will undoubtedly learn more here than at the doctor's office!
Well, that's really frustrating to have to wait for so long but he did give you the tests he would have if you'd seen him -- that's all that was done for a diagnosis even though a rheumatologist did see me right away, and it sounds like you are on the medication he would have been giving you. Even though I had a rhematologist, I found this group very helpful. Where do you live? We complain here (California) about waiting months to see doctors but it seems health care systems aren't what they used to be.
I live in NZ. We complain here too but maybe not enough! Part of the issue is living in an aging population and not increasing health expenditure in line with that.
Same over here.,Aging population,NHS on its knees nearly,and most of the poor staff doing their utmost to care for patients.Such a sad sorry state.Thank god for this forum so we can at least get help from people in the same boat as us eh?xx🌼😜
welcome to the forum. You will find so much support and good advice here🌸
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