Finally off Pred

[Tillylosh2021]

I am writing this post as I commented on a post that was 5 years old and I wasn't aware, a few people have asked me to start a new post regarding that last post. I was diagnosed with PMR November 2018 my symptoms were lower back pain extreme stiffness and extreme difficulty in walking. Prior to this I was extremely fit swimming half a mile each morning and several weekly exercise classes and had the perfect figure even at size 16. I saw my GP who put me on 25mg pred and did blood tests and said in her view I had PMR gave me a print out from her computer and off I went. The blood tests all came back negative but was told you can have a normal test but still have pmr There was a slight improvement in how I was feeling after taking prednisolone but I wouldnt say it was miraculous, I certainly couldnt exercise again , so time goes on still taking the prescribed drugs then we have Covid and everything turns to wotsit!!!!! since being diagnosed I had not seen a rheumatologist but apparently my gp was in touch with one by telephone. Through out the journey whilst on pred I suffered with my mental health all sorts of weird things and the like, the only contact I had with a gp was by telephone and obviously I'm not alone here because of the situation with Covid, dr advised me to start tapering which I did alone and with this groups help. I got to 5mg and ran into difficulty had to ring my surgery and demand to see a dr face to face which thankfully I got, I explained I didn't think my life was worth living because of the problems I was having with PMR & prednisolone, he immediately said he would get me to see a rheumy as an urgent case, which he did although I had to wait 4 weeks but what the heck after 2 years, the rheumatologist organized further blood tests and an MRI scan and asked me to get off the pred pronto again by tapering, said he didn't think it was PMR. And yes he was right, the scan showed that I have lumbar canal stenosis, I have been on Prednisolone for 2 years I have had the weight gain the ever increasing circle of dark moods and everything else associated with it all for nothing. I have been off Prednisolone for 7 weeks now I feel great well 80% better than I have done over the last 2 years, ok not a lot can be done about lumbar canal stenosis but I'm now walking a lot better and feel so positive about the future. Exercise levels haven't got back to where they were and neither has the weight but hey ho I got this!!!!! I wish now I had screamed a little louder in the early days instead of putting up with it but of course Covid screwed everything. Sorry this has dragged on but I really hope it may help someone who is struggling with their diagnosis.

[PMRpro Ambassador]

Thank you - because there is always a chance it isn't PMR, especially when it doesn't behave pretty typically. And yours didn't.

[Kendrew]

I felt really quite emotional when I read this post. I'm not quite sure how to respond....I just know I want to say something!

You represent all those people who immediately become labelled with a condition they don't actually have because the symptoms seem, or almost, fit the condition, and it's easier to diagnose 'something' rather than nothing!

Thankfully, many medical practitioners do a competent job but sadly as you discovered, some don't!

It's very sad to hear what you needlessly went through at first, but so uplifting to hear where you are now. Thankyou for sharing this with us all and long may your progress continue.

[Tillylosh2021 in reply to Kendrew]

Thankyou I can’t believe how good I feel x

[Kendrew in reply to Tillylosh2021]

👍👍👍

[Nextoneplease]

Gosh Tillylosh, I’m so sorry to hear you’ve had such a tough time. You’re probably a bit of a casualty of the pandemic, as I guess you’d have shouted earlier if it hadn’t been for the difficulty in seeing a doctor 😟 Awful what you had to put up with in the meantime.

So glad you feel so much better now - long may it continue 😊xx

[SheffieldJane]

I found your post really shocking. I am glad for you that error has been discovered. Thank all that is good that you have a curious doctor, they are like gold dust. I am so happy that you feel elated to be finally seen and understood. It is a lesson to us all to question, question, question, no matter how much time has elapsed. Wishing you a speedy recovery on your journey towards the best possible health and fitness. 🌷

[Tillylosh2021 in reply to SheffieldJane]

Thankyou and indeed we should all question and question again if there are doubts x

[yogabonnie]

I am so Happy You are well again and have Such a great attitude! What a crummy hand you were dealt … but to extend that metaphor a royal flush is ahead! Exercise again and enjoy life!!!! !

[Tillylosh2021 in reply to yogabonnie]

Thankyou x

[123-go]

Thank you for sharing this and reminding us that if something doesn't feel right then it probably isn't and therefore to question. This Covid has a lot to answer for in terms of a big change in access to doctors, etc, but I'm so pleased that you are now able to move on with a positive outlook. I wish you well. 🌻

[Tillylosh2021 in reply to 123-go]

Thankyou x

[whitefishbay]

Enjoy your life (again). Thanks for your email.

[Tillylosh2021 in reply to whitefishbay]

Thankyou x

[Broseley]

Your story is an example to everyone, thank you for sharing. This is why I didn't trust my GP's diagnosis over the phone and insisted on further tests before agreeing to a high dose of pred! I'm so glad you're finally sorted.

[Tillylosh2021 in reply to Broseley]

Thankyou x

[Viv54]

Thank you, i can see so much of me in what you write. I have weight gain ,pain with my spine and other problems ,i have felt so alone on this journey . Dont know what i would have done if i had not found this site ! I have a long journey ahead, hope one day i will get there !

[Tillylosh2021 in reply to Viv54]

Hang in there it will get better trust me and yes I agree I would have been totally lost without this site x

[Viv54 in reply to Tillylosh2021]

Thank you , I will 🌹

[betsgirl]

Hallo Tillylosh2021. Sorry to hear that you have had such a rough time over the past few years,. I was diagnosed with PMR and GCA in late 2014 and succeeded in getting off pred by 2019 and so far 🤞 have remained symptom free. However, along my PMR journey my walking deteriorated and although I thought it related to my PMR I was also diagnosed with lumbar canal (spinal) stenosis so I can empathise with you regarding how debilitating this can be. After some time trying medication and steroid injections and not seeing any improvement, I eventually opted to have an operation. Hopefully you may not need this as you seem to have made a big improvement. I wish you all the best.

[Tillylosh2021 in reply to betsgirl]

Ah Thankyou for this yes an operation is an option but for now I’m determined to get on with it so glad to hear that I’m not alone with this Thankyou x

[Francesbarbara]

This is a sobering reminder of how easy it is, to just follow the medics without question. So very very glad you have come out the other side and have a great attitude now. I wish you constant improvement and much joy in the future.

[Tillylosh2021 in reply to Francesbarbara]

Thankyou x

[123mossie]

Thank you for posting this, I had had a short high dose of steroid for a chest infection which miraculously cured the awful pain I had. The pain returned with a vengeance but she made me wait, without pred until bloods were back. She was right to do that, I now realise reading your story.