What a year!

[Spittal9]

Started off this year with talks of moving house and then found out I was being made redundant in July. At that point I thought, no problem I'll get another job and we can still go forward with our plans.

Became unwell in June just before my 60th birthday, went into hospital and diagnosed with PMR. Was then off sick from work and never returned before being made redundant end of July. Was put on 10mg daily of Prednisolone in hospital and stayed on that dose until a few weeks ago when I asked GP to increase to 11mg. I hoped by tweaking it slightly it might help with the leg and back pain and the fatigue. My GP has been great and had queried that the dose was too small and suggested putting it up to 12.5mg. She said she'd speak to Rheumatologist and then decide. Rheumatologist advised her to put it up to 15mg daily, which I started a few days ago. Now also been referred to Rheumatologist.

I'm finding any exertion makes me feel exhausted. Went to lie down yesterday at 4pm for an hour or so and ended up staying there until 7.30am this morning. Find I can't get through the day without resting in the afternoon. I've filled in two job applications in the past week and even that tired me out. I really doubt if I can work again at this stage but I do have to go back to work as the redundancy money won't last forever.

I've requested a dexa scan and that referral is now in. My inflammation markers have come way down and anemia which appeared at same time as PMR has now gone. GP has requested more blood tests, which will be done in a couple of weeks.

I also had an operation on my hand a couple of weeks ago. I had a bone removed at the base of my thumb, to relieve arthritis pain. So unable to use my hand much or drive for six weeks. I've had the operation done on my other hand a few years ago with great success, so happy it's now done.

Can you tell I'm feeling sorry for myself lol...

[Marilyn1959]

I am not surprised you are feeling sorry for yourself. We can empathise. The fatigue alone is so debilitating and, in my case, comes and goes when it pleases making forward planning so very difficult. However I am at the stage when my adrenal glands should start to kick. You are not. I would have expected you to be still in the euphoria stage from the miracle of pred. I suspect that your starting dose has not been sufficient, the lowest dose usually being 15mgs minimum. Sounds like your dose has not zapped the inflammation build up that caused the PMR. Some have starting doses of up to 30mgs. Hopefully the increase to 15mgs will make a difference. If not go back to GP. My Rheumy said I should feel 80% back to my norm if pred dose is right. Hope it gets under control soon.

[Spittal9 in reply to Marilyn1959]

I feel I have aged about twenty years nearly overnight lol. My GP has been great and is very open to what I've learned on here and listens to what I've learned about PMR. I am usually a really positive person and I suppose I still am. I know it could be so much worse. Compared to others on here luckily I don't have too much pain.

[Marilyn1959 in reply to Spittal9]

Nonetheless I expect you feel cheated being 59 at diagnosis? I was 58 when diagnosed, now 60 and feel I have aged twenty years overnight! I did though manage to keep working part time for two years post diagnosis, until Christmas when I had an accident and broke my shoulder. Hopefully once your PMR is under control you can get your life back - albeit it in a slower lane. Best wishes.

[Spittal9 in reply to Marilyn1959]

Yeah, I suppose I did. Had no intentions of not working and loved my job. Initially I kept thinking how the timing of everything was so bad. In fact it probably couldn't have happened at a better time financially as I got redundancy money. It would have been nice to have put that towards the camper van we have been wanting, instead of living costs.

[Hidden in reply to Spittal9]

You might want to read this. You have to download the pdf file.

eprints.whiterose.ac.uk/85252/

[Devoid in reply to Spittal9]

I feel for you,I have LVV diagnosis in June, just feels like I am at least 20 years older but husband,family still at the right age, never expected my daughter to have to do so much at25, be kind to yourself and rest

[Spittal9 in reply to Devoid]

Thank you! I think we all have to be kind to ourselves.

[Hidden in reply to Devoid]

Did you see the research I have linked to spittal9 just above? It's people's experiences of PMR.

[PMRpro Ambassador in reply to Marilyn1959]

I never got any euphoria!! Even at 15mg that worked in under 6 hours - I just felt a LOT better!

[Marilyn1959 in reply to PMRpro]

Oh I did. I thought pred had worked a miracle, I had been cured and that other members obviously had PMR worse than me so I was lucky!! Hence the euphoria! Didn't last though ha ha bah humbug.

[PMRpro Ambassador in reply to Marilyn1959]

Some of my bursitis was very resistant - been there too long - so didn't have a "no pain" experience.

There is also drug-induced euphoria - the Energiser bunny effect. Never had that either ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Maybe because you weren't ever at 80mg! That's rocket fuel. 🤦‍♀️

[PMRpro Ambassador in reply to DorsetLady]

But quite a few complain at 15-20mg Personally I could do with a bit of rocket fuel at the moment!

[PMRpro Ambassador]

Hardly surprising really! I think I might too - but I was able to work with a struggle, and I was a freelance translator anyway sp not a lot of physical effort required.

I wonder why they started you on 10mg - it is below the recommended starting dose and that rarely helps because it takes a long time to get things under control and in that time you lose fitness.

Do hope the increase helps - but it may not make a lot of difference to the fatigue, that is part of autoimmune disease.

healthunlocked.com/pmrgcauk......

[SnazzyD]

It’s perfectly reasonable to feel sorry for yourself I’d say! Sounds like the starting Pred dose isn’t high enough and isn’t what the guidelines say. The first thing to say is that exasperating though it is, your symptoms are par for the course and Pred only stop the inflammation not the actual disease process which will be with you for some time. For this reason you’d do well to plan long term just in case even though many docs sound like it’s a year or two on Pred and you’re back to normal. Once things get under control and you manage to reduce a bit you may be able to return, but if you can, I’d give yourself some time to give yourself some TLC. Some feel people feel great on Pred others do not, but becoming pain free certainly helps when it happens.

I was 54 when I got GCA symptoms and had to give up work, so I understand the frustration.

[Spittal9 in reply to SnazzyD]

Hi SnazzyD, 54 is so young. That must have been hard to accept. I suppose it's the not knowing that I find hard. Can't make plans when I don't know how this will all pan out. But also know that it will go eventually and that my life is going in a different direction for now. Who knows, maybe this direction still be a better direction!

[SnazzyD in reply to Spittal9]

We all struggle at some point with the uncertainty and of course the change. Acceptance helps hugely and I make a distinction between acceptance and giving up. I am a firm convert to looking for the surprise positives lying in the rubble of one’s previous life and many can say that serious illness can transform one’s life for the good. But the misery and throwing toys out of the pram are part of the process sadly.

[Spittal9 in reply to SnazzyD]

I know it's a process I'm going through and I will come out the other end. I am normally a really positive person and I'm trying to remain like that. One big bonus is that I'm having lots of time with our puppy, who shows unconditional love and also makes me move lol...

[PMRpro Ambassador]

By the way - what sort of work did you do?

[Spittal9 in reply to PMRpro]

I was a Team Leader in a 23 bed emergency homeless accommodation service. Male and female, aged 16+ years. Really busy service and always full. When people arrived there were often in complete crisis and experiencing a really chaotic time on their lives. No two days were ever the same.

[PMRpro Ambassador in reply to Spittal9]

No, I can imagine. And pretty heavy going too, mentally and physically. No wonder PMR caught up with you.

Is a less exciting desk job a possibility? Though at our ages ...

[Spittal9 in reply to PMRpro]

It was a tough job without a doubt. Physically just with the pace of the environment but also mentally. Dealing with and hearing of the often tragic lives people had to deal with on a daily was tough. Maybe it's time for something a bit more sedate lol. I've applied for two jobs, both with much less pressure. Who knows if I'm well enough yet? Time will tell...

[PMRpro Ambassador in reply to Spittal9]

My daughter was disillusioned with the NHS and went into social care - she lasted a year, was beaten up and threatened repeatedly in that time, and finally realised that the NHS was a doddle in comparison!

[Spittal9 in reply to PMRpro]

I was never beaten up thankfully although found myself many a time in tricky situations. Working with people who are marginalised and discriminated against on a daily basis doesn't excuse some of the behaviours but certainly helps you understand them.

[PMRpro Ambassador in reply to Spittal9]

These were teenagers - with horrendous backgrounds. And she is 5'2" and was a UK size 4 on a fat day ...

[Spittal9 in reply to PMRpro]

I loved my job and worked with all age groups, male and female. I found working with young people difficult many a time. I always found it hard that at such a young age many had given up hope of any sort of chance in life. In their short life many had had to deal with serious trauma as well as the struggle of just being a teenager with raging hormones and normal everyday stuff. Throw in mental health issues, addiction, abuse, rape, growing up care, to name but a few, it's no wonder they had issues. My days are certainly a lot calmer now lol...

[Thelmarina in reply to PMRpro]

That’s awful. I’m so sorry.

[Blearyeyed]

What a year!!!

Let's hope that now things are being slowly sorted out with your health that by next year you can say the same thing for good reasons.

Take care , keep you chin up and keep popping in for a chat , you'll get there x

[Spittal9 in reply to Blearyeyed]

Thanks Blearyeyed! Who knows what can happen in the next year. I'm grateful for all the positive comments I've received on here. The sun is shining and I'm not feeling so sorry for myself today. Thanks everyone!