I was diagnosed with GCA/PMR on April 12th this year after 5 years of having every symptom, constantly raised ESR, pneumonia x3, until finally a wonderful Dr looked at my history and put made the connection! I was too shocked and maybe still a bit in denial to post earlier but have found reading posts incredibly helpful. Especially in the dead of night when a million questions about the future come to mind. And weekends when problems surface and the last place you want to be is calling 111 or sitting in A/E. But really I just want to thank Lorna who I spoke to today on the Scottish helpline and all the encouraging and well informed advice. I was a typical hyperactive sporty person, and thought I could beat this crazy illness, so it has been a huge help to learn to pace myself and learn some patience and humility. And great to have ammunition for dealing with well meaning but inexperienced Drs! Although I have to say I love my GP, he is the absolute best old fashioned family Dr you rarely find these days. And I also quite enjoy being able to be more straightforward with people, a side effect of steroids that is seriously underestimated! Every journey is a chance to learn, even when it’s not the trip you had in mind!
Thank you for this amazing support group - PMRGCAuk
Thank you for this amazing support group
Hi Stimpey
So pleased to hear you received the support you needed at the time you needed it.
It’s simply awful when you feel so ill but know one seems to know why?
If you have any questions there is usually someone around who’ll be able to help.
Take Good Care
Kind Regards
MrsN
Cheers for Lorna!! I've sat in her living room while she is on duty for the helpline - she is awesome!
And you have already learnt the most important lessons! "I was a typical hyperactive sporty person, and thought I could beat this crazy illness, so it has been a huge help to learn to pace myself and learn some patience and humility." - you are well over half way there.
So glad you finally have a reason for feeling ....refer to first part of my name. 🌻
So pleased to hear, you , like the rest of us , find the forum helpful , especially when the mind whirls in the middle of the night.
I am really impressed with your positive attitude , as with all health setbacks , keeping hold of the silver linings , along with building up patience are really key to being able to cope with long term conditions like our wonderfully high maintenance friend called PMR!
Hope the forum keeps on helping you down the road , and now you have said , " Hello" , if you ever need any specific advice you can't find from searching you will pop up and ask the questions you have.
Onward and upward , take care , Bee xx
I have to admit my initial reaction was delusional! I spent two weeks in tears, then two weeks laughing inappropriately, and read posts and thought the idea of struggling to taper by .5mgm was crazy. The day after my diagnosis, with 3hours sleep and 60mgms of prednisolone I jumped on my racing bike and cycled at high speed to my first hospital appointment, literally flying along, it was truly a miraculous recovery, I was like Lazarus! Needless to say that was not either sensible or sustainable. So I have come a long way in a short time, still struggling to be realistic (although cramps and claudication do teach you quickly that you are in fact ill) and way more appreciative of being given my life back, albeit a different life for now. I had given up all hope of getting through another day before I was diagnosed, and was in despair, so despite the side effects and limitations I’m just grateful. I’m a nurse, and also have my 4 and 10 year old grandchildren living with me so to be able to get up in the morning and put a smile on my face is amazing. I’m off sick for now and am prioritising my health for a change with the full support of the wonderful college I work for. I know I’m going to have setbacks but thank goodness for this forum. I cried with laughter at some of the descriptions of robotic walking and then it happened to me! I have always found laughter the best antidote to self pity and I know it’s not always possible but it helps hearing the funny stories. There is always light at the end of the tunnel.
Don't put yourself down , you've done exactly the same as we all do in that first month.
You should be patting yourself on the back that when the lessons have been dealt you have learnt from them very quickly instead of trying to carry on regardless and then continually paying the price.
Learning to accept , adapt and be patient early on makes the journey much easier .
Well done you , you have learnt you need to prioritize your health to be able to carry on xx
What a great post Stimpey! Keep in touch.
I know this doesn't relate to this post but would you tell me the name of the cream/ointment you use to alleviate your knee problems. You mentioned it in a post sometime ago. Many thanks.
Flexiseq 50 mgs - Boots or Amazon. Recommended initially by jinasc and it really works, unlike the Ibuprofen type gels that did nothing, for me.
I am so pleased you found Lorna and the first charity in the Uk for PMR &GCA started by Jean Miller. Lorna worked with Jean and then another mate, Bea. You will get excellent support in the future.
PMRpro and Lorna have done so much - ask them about their work with Omeract.
Thank you for your comments. I haven’t become a member yet as I dint have a printer at home but will sort that out asap. Also can you tell me about the Omeract work you have done, and in case Lorna doesn’t get these posts could you let her know it was great chatting! I’m not the most technological person so hope replying like this goes to you. 🙏
Lorna isn't a member of the forum - not her scene she says and fully occupied with her work for the charity. But I will tell her.
We are both patient research partners (PRPs) with the Leeds PMR/GCA group and that involves various roles - telling medics when their approaches to patients in leaflets are too medical for example or helping develop questionnaires that are comprehensible and relevant! Lorna also sits on various committees and groups as well as doing a great deal with the Scottish charity. As PRPs we have both been to OMERACT meetings where we as patients have a standing equal to the healthcare professionals and form a fixed proportion of the group - it was established to draw up criteria for whether an intervention in a disease has a positive effect on the patient. And who better to advise on that than a patient?
Thank you! I called the helpline number as I wanted advice about an expert Consultant in my area but forgot to mention that as we went through my history and got side tracked. I understand that Professor Jayne is an expert in Lupus but I found him really unempathic, but more to the point, hadn’t read my notes, insisted I come down 10mgms weekly from 60 to 20 and when I asked about my chest X-ray pulled it up and said I had shadowing on my lungs but we could deal with that at the next appointment so you can imagine in 40mgms of Pred how anxious I became! I have seen a different Dr in the Vasculitis clinic on each appointment. I don’t mind going further afield if necessary. I have a brilliant GP so much as the Professor told me nurses make bad patients I don’t agree, I’m not difficult but it’s taken years to get to this point and I do want someone who is happy to have a dialogue! I will go along to the local group but can’t get there this time. I could pay for an initial consultation if that helps get to an expert in GCA. Any advice would be welcome, and thank you! Now I’ve come to terms with the diagnosis and treatment I want to get it right! Also, should I follow the DSNS taper from 20mgms, I feel I’ve reached the tipping point as I have temple pain again, not terrible but present. I have had a history over the last 5 years if flashing lights and severe headache, and even temporary sight loss in my right eye but was told by a previous GP it was migraines. I don’t think so and with that history in mind and raised IOP since my diagnosis in April I do feel vulnerable.
Is Southend too far ? When it comes to experts in GCA, Dasgupta is definitely up there, without him there'd be no charity! Or Rod Hughes in Chertsey is just a great doctor as well as good at PMR and GCA and will have a dialogue. Both do private. Or start a new thread and say where you are-ish and ask for recommendations, Cambrigeshire but is Addenbookes the nearest hospital? How far would you travel?
If you are having symptoms again then reducing shouldn't be in your vocabulary. When you had that temporary sight loss were you properly investigated? If not, you should have been, that is a symptoms not only of GCA but also stroke.
Re sight loss, I had flashing lights and went to my old practice, the senior partner said my vision in the right eye was really bad so referred me to the emergency eye clinic but didn’t say he thought it could be a detached retina, I checked my notes a few weeks ago, and In fact I wasn’t seen for 10 days by which time my sight was back to normal. So I am very lucky not to be blind in that eye. My care has been a catalogue of missed opportunities and frankly incompetence. Vasculitis was raised as a possibility on my first CT scan when I had pneumonia the first time and not followed up. And Drs really don’t like nurses suggesting a diagnosis and I would get better, carry on and then get hit again. I really became like a clockwork toy, just force myself up, get through the day and repeat. I could try for Dr Dasgupta, I will look into that. Southend isn’t the end of the world. I’ve got an appointment tomorrow at Addenbrookes so will be firm about reducing. I’ve also had this fine twitching of my muscles, particularly my calves, just the last few days, is that likely to be steroids or PMR? I’m sorry to keep asking but I do trust your posts. I think my symptoms are really quite all over the place, it seems to have attacked my lungs and kidneys at the very least. I’m being referred back to the respiratory clinic and having a CT Aorta in July. I’ve had nerve conduction tests and a normal brain scan, I have pins and needles in my right leg which apparently is probably down to Vasculitis, that happened 18 months ago. Not much left to check out now except asking for a Dexa scan which I will do tomorrow. I am still pain free and happy!
I have just had a private message on another forum from someone in Australia who has just been diagnosed as having ANCA vasculits after a long diagnosis of PMR. She has a history of microhaematuria - and is now found to be in Stage 4 renal failure. The nephrologist thinks she has never had PMR but the vasculitis (formerly known as Wegeners) has been lurking all along. If your lungs and kidneys are involved - I trust it has been ruled out in the meantime?
mayoclinic.org/diseases-con...
My fear is there are a lot of us who have more than "just" PMR/GCA. I am lucky, after rather a dearth of medical input for years, I now have a lovely world-renowned rheumy in the local hospital. But in the last 18 months I was concerned about what I was fairly sure were asystoles but never very long, just like waves rolling over me. I could control them with higher pred, the cardiologist was happy. I wasn't entirely but, as you say, what can you do? They never showed up on a Holter. Then this happened:
healthunlocked.com/pmrgcauk......
I feel better now than for ages. Is it coincidence? But I have to reduce from the 15mg pred I needed to manage the problem. And I have had several months on 15mg I needn't have. I think that we need multidisciplinary care - and I'd have hoped Addenbrookes would have that option, my friend with lupus+++++++ is there and looked after in an exemplary manner. But only - I suspect - because through her own research she has got the whole picture and found True Detective doctors who listened to her. This after ones who did Ig levels that were catastrophically low and dismissed as "lab errors". Once, yes, OK, twice, well, maybe possible. More than that? No, really?
OMG! You are a trooper, and I do believe in Karma, it’s the only way I cope with the anger towards incompetent and uncaring people. That man should be thrown down a mountainside! The Registrar did say (she looked about 15) that they had had a case conference about me and felt something else be going on so I think they are being thorough now. I have stage 2 kidney disease apparently but no one thought to tell me, despite repeat blood results showing deterioration. This isn’t the NHS I joined in 1974! I did tell her I felt let down and also that I wasn’t going to be a passenger in my own life. I think I knew I had GCA in 2916 but was falsely reassured and too scared to want to believe it. I am the worlds biggest denier of reality when it affects me. But my grandchildren and son totally depend on me, they’re Mir mother had serious drug and alcohol problems and to all intents and purposes I am their mother so I have to do whatever it takes to get well. I really do hope you are taking it easy! And your husband. 🙏
No - it was all a bit different then wasn't it even if they didn't have the drugs and techniques to save lives there was care and compassion. Where I worked anyway.
I don't think it has hurt me greatly, a bit handicapping for a while, and OH wouldn't be here at all without the NHS 25 years ago. But it is a worldwide problem - which is what is most concerning.
Well I saw a lovely Consultant this time and she listened, showed me all of my results and although I’m ambivalent I have agreed to start methotrexate as my ESR is still elevated and I can’t seem to get below 20 Pred without the GCA symptoms returning. She agreed to a 1 mgm drop over 4-6 weeks which was reassuring, and starting at 2.5 MTX, increasing fortnightly by 2.5. I pointed to the exact place where I have temporal pain and she said that was definitely the artery. My BP etc were all good and she checked me thoroughly. My kidneys are fine now, my GFR is back in the normal range. I will start your taper next week but stick at 20 for a few days. Does this sound ok?
You take care of yourself and fingers crossed you can have a collocation with a consultant/ Dr of some kind!🌻
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