Finally, a diagnosis!

Finally, a diagnosis!

Greetings to you all.

My name is Tina, I'm 60, I'm female.

I've had a challenging 12 months of thinking "I feel so old, if this is old age, God take me soon". I'm too old and knackered to do my job, (occupational therapy on the community working with children with profound physical and mental disabilities). So I retire early, with the promise of returning on a Bench contract, thereby I can choose when and for how long I work. We have a holiday home in Andalucia, Spain. My husband had a stroke 5 years ago, time to make time for us now. We are both 2nd time arounders and been together for 13 years, kids grown up. We sell our large house, buy a smaller flat, pay off debts. Let's have a long holiday in the sunshine, drink good wine, eat the best olives in the world and grow old disgracefully!

After three months of discovering this forum and reading all your posts, silently thinking "I feel that pain and total misery too", I was just yesterday finally given my own diagnosis of PMR and probable GCA - but after 25 days of Pred (40mg for 5 days, 35mg for 6 days and 14 days of 30mg) it's impossible to prove the GCA now. I paid for a private Rheumatologist consultation yesterday, as my GP thought I had PMR but felt more was going on too. My first ESR was 101, after 5 days on 40mg Pred the reading was down to 35. I felt improvement within two and a half hours of taking the first dose. But the quick tapering hasn't mopped up all the inflammation and although my suicidal thoughts had receded, the fatigue and pain reduced by 60%, the nice Rheumy told me to increase immediately back up to 40mg and this morning, as I write, I feel like the old me. The NHS wait here on the Fylde Coast, is at least 8 weeks and 12 is more realistic. It was £150 well spent, a one off. When I was working, I would spend that on a pair of winter boots, I'm happy to wear an old pair this year!

I hate to criticise the NHS, I've been proud to work for them for most of my life, but my experience of seeing a different GP every time in our group practice, including trainees, hasn't made my PMR journey easy. They have so little time allocated, 10 minutes per patient. Some GP's didn't even make eye contact with me, they just kept tapping away at the keyboard whilst I told my tales of woe. One GP sent me for an X-ray for the wrong limb! It's a shame that they are under such pressure and we ultimately suffer too long before getting the proper treatment.

To all the folk who read this, don't give up. Keep going until you too find someone who listens. This is my first post, I have gained so much from you all, I feel as though the "aunties and uncles" are my mentors, the rest of you are my cohorts and Kate's book is my bible. X

23 Replies

  • Hi Tina,

    And welcome. Unfortunately you’ve found, like many, that a quick reduction does not work with GCA or PMR. I think many doctors don’t like Pred because of the side effects - but what strong drug doesn’t have them? and if they do prescribe them for some other illnesses like asthma you can come off them quickly - but not ours!

    I stayed at least a month at every dose - that way you are sure it’s enough before you taper to the next dose. If I knew I had something potentially stressful on the horizon I waited until afterwards.

    There is no rush, this/these illnesses are not going away within a matter of weeks or months, it’s going to be at minimum 2 years, very often longer, so do things slowly. Some doctors don’t like that approach, but as most of us have found it’s the only way that works.

    I think we all realise the NHS is in dire straits these day, but it is what it is, and our illnesses are not very well understood, inside or outside of it - which is why forums like this are so helpful and supportive.

    You can still live life as you dreamed, but maybe not for a little while - but you will.

    Take care.

  • Bless you Auntie DL, and although you don’t realise, i’ve read your posts past and present for months. You are kind, inspirational and well informed. Every blessing to you. xxx

  • Thank you. Wish I’d been better informed at the beginning - but I guess a lot of us could say that.

  • Hello Tina and welcome! Let's hope the lovely getting old disgracefully plans can be put back in motion for you!

    I got awful depression with PMR and " old and finished" feelings. The bad feelings lifted as soon as I took Pred and haven't returned.

    There is quite a journey back to good health and you will have to learn patience and pacing activities and to come off Pred using one of the tapering applications available on here.

    If I were newly diagnosed I would immediately put myself on a carb and sugar light diet. I was thin when I started and my body shape is completely different now. Kind of top heavy. I could have minimised this with diet and I didn't. I don't over eat, but I have too many wrong foods, Pred then packs the unwanted fat in your face and your back and your tummy.

    Wise bears on here caught on fast and have avoided this. ( Top Tip).

  • Thank you SJ, I already have ample timber on my frame! The undiagnosed/acute phase did minus off 8kg, so I should follow your advice and capitalise on the head start. The downside is that spending the last 6 weeks in the UK has made me realise just how good English food is, after being in Spain. I've made a beeline for bacon butties with HP sauce and baked egg custards! Hey ho... I'm mindful of what you say and will try harder now.

    I feel that I know you too, having read all your jottings and challenges. I wish you strength and every blessing that you are healed in the fullness of time. X

  • Thank you LeafyLytham. You sound like my kind of girl. Go well!

  • I saw the same GP every time nearly - didn't help. My bloods were normal so "there can't be anything wrong" - for 5 years! Had a worked my way around all the doctors in the surgery it would have been caught - but the expert was female, part time at best and on maty leave half the time so I never bothered seeing her.

    You have a local charity in the northwest and, I assume, support groups:

    I'd also be surprised if there weren't a fast-track scheme for GCA somewhere not too far away. The trouble is that GPs don't take potential GCA seriously enough - if they treated heart attack or stroke patients as they treat us there would be iproar. And that is all GCA is, a stroke of the optic nerve due to ischaemia (lack of oxygen supply).

  • Dear Uncle PMRpro, thank you for your thoughts and also for the link to the support group, which I hadn't known about. I have read your no nonsense and straight to the point jottings many times.

    You are a Pro! And I'm so much better informed about our condition now, thanks to you. Bless you for all your input and keep on, keeping on. Together we stay strong, inspire others and lend support to those who are struggling in what can seem like "quick sand". You are a virtual Cedric Robinson, confidently leading the flock of us lost souls across Morecambe Bay! X

  • Um - I'm an Auntie... :-) Not that I'm gender-biased ...

  • Lol as soon as I read LeafyLytham address you As “uncle” I burst out laughing & thought ohhh ohhhh, this is good, can’t wait for the lol

    Thanks to Leafy for my first gut laugh of today..

  • oops x

  • Lol lol loved it, thanks for the laugh, PMRPRO is without a doubt a great informant “auntie” here. What we would do without the “aunties” & of course “uncles” I really do not know. This site is my first source of reading every morning.

    Welcome to this PMR family, not a club I would ever have wanted to belong to, but through the special people here. Life is not so scary anymore..

  • Wow it’s like dai shar vue reading on hear about Doctors. 😱I say to people. I am a internet doctor reading as much as pos about my problems. I feel my body better than anyone can. My doctor as thousands of patients. I have one. As Tina says she felt really old at 60 😱I did when I was working.

    Now at 79 I do not consider myself old. I work hard on fitness. But I also realise I am also very lucky.

    Also good and brave of you to add a photo of your self. You have prompted me to do the same.

    Liken to coming out of the closet. 😂😂

    Best of luck everyone

    Nil carborundum illijitermy. 😂😂

  • Hello dear hearts!, how enlightened to come forth with minutia! I rather hate the elderly designation my chronological age has conferred! cannot be denied that “elderly” now defines me!! Well...whatever!!!

    I intend to fight to the end!!! Whenever that comes! Victim I am not!!

    Aging disgracefully is my new goal!!

    Regards, Jerri

  • When I first when to the doctor, I thought it was my blood pressure tablets, so we changed them to remove that. Then, I had, a telephone consultation, not with the doctor I'd seen before, but one that stood in to cover a different doctor. Somebody was on my side as he said the thought he knew what I had, PMR, and wanted to do some blood tests and to see me.

    Two sets of bloods, a face to face visit and I was on a trial of 15 mg prend, wow the next day was great. The bloods came back normal for everything, but my doctor continued with his clinical diagnosis. I continued to see that doctor face to face or on the phone until he retired last month, Today I see a new doctor, I just hope he'll be happy to see me through the rest of my journey.

    I've been tapering down and was heading to 5mg, but the last 2 weeks have been hard and I'm back on 7 and won't be starting another taper for a few weeks at least.

    One thing I have found is the support and ideas in this forum, thanks to that I'm looking at a new taper, when I start down again.

    My first post on here really helped me, I was feeling very negative about things, and the help and support in the replies to my post boosted me no end. Chatting with people certainly helps, a trouble shared and all that.

  • All praise for our (NHS - Auckland, NZ) hospital diagnostic team that went to work on me. Threw me through all the tests, scan machines, had temporal artery biopsy and came with the diagnosis - GCA. It's been almost a year since it started. Now down to one hospital Rheumatologist and GP monitoring and keeping watch. Good days, bad days - par for the course. But there has been definite progress. Tapering off prednisone has been one mg less per month, blood tests once every two months.

    It sure helps to read others' experiences . . . hope our comments have helped.

    Cheers - from New Zealand.


  • Oh you poor thing - I'm 70 and a lady and two years before I was diagnosed I didn't feel well. I spent a lot of money trying to find out what was wrong with me until the pain appeared - I was then correctly diagnosed - my go was brilliant and has been for the last 18 months. Like you, we have been together for 14 years - second time around but are now splitting up and bungalow for sale - more stress which doesn't help the pmr!! My level started very high but I now have it under control so be patient, you will get there.

  • I have been seeing the same GP for 27 years. I have always liked him he is always treated me well and is a very kind Dr. But my last visit with him was less than acceptable. And I live in the US 9so I do pay for my own visits although I do have Medicare which pays for the majority of the visit I just have to pay $10. But what I say is irrelevant. What gets me is when I get no I to eye contact like you said. And of course the short duration of the appointments even here in the US Dr scheduled them so tight I don't know that it's 10 minutes it might even be 5 minutes. Anyway my point is just to tell you I feel for you.

  • Ten thousand welcomes! I am so happy that you have found the path to healing. Blessings to you and your husband fellow cohort:)

  • Dear Tina..Welcome to this Forum and what you say is so true. I and my Partner Pete are second time arounders and l hoped for so much when we met over 9 Years ago and l was honest and told him l had PMR hoping it would Fizzle quickly but it didn't happen that way as you are not told enough in the beginning and it's only in the last few years that l have found a better Medical team .l have had PMR for 13 years and still hoping for answers, but as you say we have to stay Positive through the tears and the pain. Take care and l hope so much that things improve for you now . Best wishes trish29

  • Hi Trish,

    13 years? Oh my goodness. I can't imagine what you've been through on your epic journey. I hope Pete has proved to be a good 2nd time arounder and been able to support you throughout those tears and pain. A "blessing" that you already had PMR when you met, he has never known the other Trish.

    I say to my husband now, "bear with me Tim, the old Tina is still here, somewhere. I just need to reconnect with her again and then I'll be able to reconnect with you". During the chronic/acute/untreated phase, when I was unable to clean myself properly after using the toilet, aware that I was beginning to smell, I felt so desolate and embarrassed, I hated myself. I started sleeping in the spare room, night sweats so bad that the pillow was saturated. I used to sleep in my clothes, too painful to get them over my head. One day I had to cut myself out of the clothes to get in the shower.

    With hindsight, I should have shared this with Tim and not shut him out, but I felt so low back then, all I wanted was peace and quiet and to be alone in my very personal and private misery. We all cope differently with chronic pain. With 50/50 hindsight, I wasn't coping at all!

    We have been apart for 7 weeks now and on Friday I plan to fly to Spain and reconnect with my husband! I'm as excited as a schoolgirl and imagine us running towards each other in slow motion with open arms.

    That's the joy of Prednisolone, it's not all bad news with side effects, good really can come out of bad. Yes, keep looking for the positives, Trish. I wish you positives and good things too. X

  • Hello Tina..yes its been a long Rollercoaster ride with this chronic PMR. I feel for what you have been through .My 2nd timer arounder Pete has been so Good to me but at times it gets him down. I have visions of you running across the sands into your hubby,s arms..l am looking forward to tomorrow to have some gentle Bowen Therapy. I have a very caring Therapist. Take Care and stay Positive..trish 29

  • Hi, I live in the United States and our care sounds the same. When I go to the doctor I tell him, "When you are finished looking at your computer I will then ask you questions and let you know what I have experienced since my last visit." That gets their attention. Most of the time I know most of the answers before I even go to the doctor. I do a lot of research and, of course, read these posts. My diagnosis took two years. Doctors kept blaming everything on my back and yet when they looked at my back xrays they would all say, "Your back does not look bad at all." I just kept going to every doctor that I could unti la SED rate and CPR test were given after 1.5 years and that put me on the right track for my official diagnosis by my Rheumy. My doctor pretty much lets me manage my own medication and I try to be very conservative. Good luck.

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