Going out of my mind

[August7]

I first posted about 4 months ago and received some wonderful advice which I was so grateful for.

I was diagnosed with PMR, put on Prednisoloneand have had problems getting below 10mg.

I have a son with Learning difficulties and it’s fair to say it’s been a tough couple of years. It’s just us and ‘our girls’ our wonderful furballs but I lost my rock who was 11 years old just before Christmas. I feel my heart has closed.

My rheumatologist I saw a few months ago feels it may be a PMR/Psoriatic Arthritis crossover. He advocates methotrexate. I admit to not being keen.

however symptoms have gone insane. I can deal with pain, I’ve had experiences of this in the past, but this is off the scale, unrelenting and debilitating.

my shoulders continually painful, my spine..feels like every vertebrae joints each side are pinging off..can hurt to take a deep breath. The latest thing (I’m so sorry this sounds so dramatic to write and it has taken me a month to pluck up the courage to post and ask for advice),my pelvis ? Sacro ilea joints.. wow nasty. Started on L. Side as if someone was stabbing me in the buttock, made me yelp to try and walk. GP has ordered MRI due next week.

Seemed to be settling after 4 weeks when suddenly R. Side has gone the same way. Now involving lumbar region too. I feel as if my back is about to break and the pain is horrendous.

I rang in to my surgery and was told to take myself off to A&E … we only have one main hospital in this part of the country… not the most sympathetic of GPs…said it could be a medical emergency of Cauda Equina and I had better get there ( under my own steam so some emergency) and that if it was this I could end up on another 3 hour journey to another hospital. I could not go and did not believe the sx pointed to his diagnosis (touch wood), and I certainly couldn’t just leave my son.

I have no idea what is happening to my body but I feel close to giving up. I cannot do anything I normally did, it’s affecting my son. I’m due to start Methotrexate injections as I suffer with gastric problems and did not want to exacerbate them with oral tablets but I feel so very lost. Is it still PMR or what. My crp is starting to increase but my monocytes are off the scale at 220 and seen as ‘acceptable’. All I want is a plan, to know what is happening to my body so I can get on with looking after my son and home.

I am due a follow up Rheum consult in Feb but no sign and waiting lists are long, the GP surgery are beyond booked up and difficult to see one of the 2 GPs who have been helpful. I hope to try and wait for the MRI of my spine next week but I am terrified something is going to happen. If I could just get some respite from pain.

So there it is, I apologise for the length of this but I feel very much alone and I am rubbish at asking for help as I’ve always just had to get on with things. But I know there are some very well informed and clever folk on here and if you could shed any light on to what is happening I would be so very grateful.

But all good wishes and thoughts to all you souls out there suffering with PMR, GCA and all the other associated ‘nasties’….it sucks!

[PMRpro Ambassador]

Well for a start - at what point on your pred taper did the return of pain and symptoms start? You cannot go below that dose or you end up back where you were.

I, too, have had SI joint inflammation that made standing from sitting and walking next to impossible. Luckily I have a superb rheumy who does a couple of techniques that the Pain Clinic won't offer me because I am on anticoagulant medication and I "might bleed". It is part of what is called GTPS - greater trochanteric pain syndrome and like you I also have spinal problems, in my case a scoliosis which just adds to the stresses between my back muscles and the spine. The most effective thing done for me in the last 2 years was a steroid injection into the right SI joint which is the one that always plays up and eventually the other starts to join in! Do your GPs offer such an option. Or the rheumy? You can but ask.

I have just looked back at your first post - and really, I doubt we can say much different to what we said then. If the rheumy is suggesting something more in the way of an inflammatory arthritis - then methotrexate is absolutely reasonable and it also does help some PMR patients so is worth trying at least, The list of adverse effects does sound awful I know - but there are a lot of patients who don't have unacceptable adverse effects. You have to try it to find out - and at a research meeting I was at last night it was suggested that MTX injections are not only more effective than oral MTX but also accompanied by fewer adverse effects.

You DO have a plan - starting MTX injections so that is the next step. It may be that that turns out to be a positive step - and every journey starts with a single step. If it doesn't work in 3 or 4 months, they will have to think again.

You have had spinal investigations - what? When is the back pain worst?

[August7 in reply to PMRpro]

Thanks for getting back to me. To be honest the best I’ve felt on Pred is at 15mg but the Rheum, Nurse Specialists et al were unhappy for me to be on that. To be fair once I had been told about the probable PsA crossover my thoughts were that I had to get the Pred down so I could get on treatment for the PsA. Not logical at all.

I have osteoporosis of the spine and bilateral hips, broke my coccyx after being knocked off my scooter as a student. I’ve mentioned to the rheum about the pain in the spine and ribs and he nodded sympathetically. From what I’ve read this can be related to inflammation in the joints attaching the vertebrae in PsA, but I did see something somewhere about similar findings in PMR.

The back and shoulder pains have now become constant companions. I don’t think the cold damp weather helps. I can put up with that to an extent but the lumbar ? S.I. pain is a step too far…literally.

Good to hear re: Methotrexate injections, I had come to the conclusion that I needed to at least try. Silly but I still can’t get my head around PMR etc presenting. It’s a year this month and I can’t believe I haven’t got a grip on things.

[PMRpro Ambassador in reply to August7]

Then the rheum, NS et all all need to learn a LOT more about PMR. IF it is PMR, and they diagnose it, then they have to be prepared to use the only available medication properly. FIRST they must get the inflammation under control, and that includes the accumulated inflammation from before starting pred. 15mg is at the lower end of the recommended starting dose range: the lowest effective dose in the range 12.5 to 25mg. Then you titrate the dose to identify the lowest effective dose. You need enough - otherwise it is pointless.

If there was any thought of a PsA crossover - the correct thing to do would have been explain and start you on MTX to get the pred dose down. It is hardly rocket science - they even use it for PMR patients who get stuck on a relatively high pred dose, the medications are NOT mutually exclusive.

No, cold and damp DON'T help! Mind you, think yourself lucky you aren't in Scotland!!!! A Cornish winter day bears a distinct similarity to a Scottish summer one ... I suspect too that you are also doing rather more physically than is reasonable with a PMR/PsA diagnosis. I know it is difficult with your committments - but something has to give.

Oh - and stick around here a bit more. You will learn ideas to try and help with the problems of living with this lot and have the company of people who know exactly what you are dealing with - including as a carer.

[August7 in reply to PMRpro]

Thanks! Mmm Cornish mizzle and Scottish mizzle must be a match..

Hands up that I’ve always been used to doing all and never sitting still so it’s frustrating to not be able to do that, and I have been my own worst enemy by going mad on a ‘good day’ in the past with inevitable comeback.

I’ll take your advice with me and take one day at a time. My goal is to just get through to the MRI in a weeks time, if it worsens I will go to A&E. So a plan …thank you so very much

[PMRpro Ambassador in reply to August7]

Almost all of us were up and doing types and struggle with the things we can no longer do. But it isn't just a case of taking some pills and all is back to normal - you have to do your bit too and learn to rest and pace as well as do.  DorsetLady usually gives out a "welcome pack" of links but I can't see them in your first post - I've managed to find it ao here is the link. Do read it all and take note - it is important.

healthunlocked.com/pmrgcauk...

[August7 in reply to PMRpro]

I hear you and thanks again. I will read the above.

[Louisa1840 in reply to PMRpro]

"Almost all of us were up and doing types" I wonder if there is a link here? Having PMR necessarily means adapting our lives to try to eliminate stress and too much physical activity. Maybe the more passive personalities are able go into cruise control more than we get up and get 'em types? I said to my husband yesterday that our lives seem to be very quiet now to which he replied that it suits him and then he went back to his crossword!!

[PMRpro Ambassador in reply to Louisa1840]

It's been discussed many times!! Usually because people try to carry on as before and it isn't a good idea!!

[Missus835 in reply to August7]

Sounds a lot like my pains. I have osteoporosis with 10 vertebral fractures. Could you possibly have compression fractures in your spine? Also PMR and fibro. Muscle spasms wrap round from back to front. Often difficult to take a deep breath. I also now have bursitis - maybe. Cortisone injection given Tuesday has not kicked in yet. The pain is excrutiating. I hope they find something to help you. Anything might be worth a try.

[August7 in reply to Missus835]

That sounds very similar. I really feel for you. Taking the deep breaths in…exactly the same. One Consultant mentioned that I had myofascial pain along with PMR and PsA. Currently I can only walk a few paces with a stick around the house, (never used a stick so being a belligerent so and so I’m using my walking pole!),I think it’s the sacro iliac joints but you describe the pain so well, excruciating. I used to be walking 4 miles a day. The ‘regular’ PMR pain continues. I have no option but to wait for the MRI and hope that sheds some light on it. It feels like no medic wishes to carry things through, offered painkillers and go to A&E if red flags.

I hope that you get some relief from your pain, sending all good wishes and thank you for sharing with me. Take care x

[DorsetLady PMRGCAuk volunteer]

hi,

Sorry to hear you are going through such a bad patch.

As mentioned by PMRpro find my intro post -maybe have a read through it. There is a lot of info included, but please do read it, and maybe refer back to it as and when -

healthunlocked.com/pmrgcauk...

[August7 in reply to DorsetLady]

Kind of you. I will read the above and try to behave !

[August7 in reply to DorsetLady]

That gives so much insight into the disease process, and a whole lot more I had not even considered. Thank you for that , I have saved it and will revisit those wise words. Take care.

[DorsetLady PMRGCAuk volunteer in reply to August7]

Not sure why I didn’t send it in reply to your first post… must have had a senior moment! 🙈

[August7 in reply to DorsetLady]

Hah, no worries. I find these senior moments encroaching more and more!!😉

[Pollyone in reply to August7]

Sometimes we who look after others need to look after us too but I know how hard that can be. I’ve got a 2 year old and daughter staying for a week, whose wedding we are planning in 8 weeks and a 93 year old aunt I’m responsible for in hospital and sorting a care home for. Amongst running small businesses and life! Feel stretched but trying to pace! Just wondered if you had a recent Dexa scan as that might indicate where issues are but maybe MRI will be of use. I’ve just reluctantly gone on methotrexate tablets in order to help come off the steroids (a year in on them so far). No significant reactions yet and on 2 weekly blood tests to check my liver is tolerating them. Aches / walking issues come and go just when I think I’m in a good patch. This website is a mine of info - when I have time I do check it out. I have bad osteoporosis in the spine so looking at strengthening that too. Good luck with your journey.

[August7 in reply to Pollyone]

Thank you Pollyone. Yes I too have osteoporosis of the spine and hips. I was put on Denusomab injections to try and counteract the Prednisolone effect.

I hope you have a positive experience with Methotrexate and wishing you strength to cope with all your committments. 😊

[Angelsmummy]

My heart goes out to you August,such a hard ,sad story to read.All I can do is send you a massive ,warm,comforting hug,and send you love and healing thoughts.Really hope you get some relief from all of this soon.xxxx💐

[August7 in reply to Angelsmummy]

Very kind words and very much appreciated. Thank you Xx

[suzy1959]

I also want to send you a virtual hug. This is hard!

Not only do you have to get to grips with a new, life changing condition but you also have to get informed and learn to advocate for yourself since doctors ( GPs and Rheumatologists) very often know very little about how to manage this and it is actually a very individual journey for each of us.

I have been at this for nearly 13 years and only just been able to significantly reduce the Pred. this year. What a lot of ups and downs I have had!

Looking after yourself and trying to listen to your body are paramount now.

Take care.🙂

[August7 in reply to suzy1959]

Thanks so much. I am rubbish at trying to navigate the site so apologies for late reply. 13 years ? Wow you are a brave lady. Really appreciate your kind words ..and the hug😊..I can’t remember the last time I had one. Thank you againXx

[random901]

Hi August7. Really sympathise with stabbing vertebra and buttock pain. Glad to hear you're having scan. My GP's physio, seen yesterday, has carefully explained XRay results which show arthritis in spine and compression fracture to vertebra Lumber 4. In addition to a combination of paracetamol and dihydrocodeine, I have been prescribed Voltarol gel to rub into back and buttocks, plus some carefully-selected exercises which can be done seated or lying down. Am also trying a heat pad (from Boots chemist). All these things are easing pain, but not the frustration! Am sticking to 11 mg pred atm. I do hope your problems are identified and get better soon.

[August7 in reply to random901]

I didn’t realise you could take dihydrocodeine with Prednisolone ..that would be helpful. Sounds painful too for you !! I have a heat pad from Dreamland and it is such a help. There is a 4 month waiting list for Physio here..I wonder if it would be worth a private consultation but that is not something I could maintain. I really appreciate your advice. Do take care of youXx

[PMRpro Ambassador in reply to August7]

Or the GP can prescribe cocodamol which is a fixed mix of codeine and paracetamol with varying amounts of codeine. You must be careful not to exceed the doses of either.

[August7 in reply to PMRpro]

Not great with Co codamol but thank you.

[Doraflora]

there’s no advice I can offer but please don’t ever feel frightened about posting on here. It’s always good to offload and there is always someone who can guide you.

Things WILL get better for you. One day at a time…x

[August7 in reply to Doraflora]

Thank you Doradlora. Daft isn’t it..for the last month I’ve wanted to post but thought it would sound trite in view of all the other horrible things people are experiencing. I’m so glad I did and the replies have warmed my heart. 😊Xx

[PMRpro Ambassador in reply to August7]

Nothing is ever trite - if it is bothering YOU, then it is a problem and you should ask. There are no silly questions - except maybe when someone asks the SAME question 40 times expecting a different answer!!! If the situation has changed that is different though.

[August7 in reply to PMRpro]

Yes 40 times may be a tad too much!!!😉😆Thank you PMR pro

[Doraflora in reply to August7]

Don’t worry about that. I’ve posted no end of stuff when I felt the need to offload. It’s amazing how much better you feel when you get a response from someone.

You’re never alone on this site.

Hope you soon get some relief from everything. x

[DorsetLady PMRGCAuk volunteer in reply to August7]

as PMRpro has said nothing is trite .. and if you are worrying about is its not helping you or your illness -so ask😊

[Angelsmummy in reply to August7]

No way trite !Everybodys experiences are different,what is happening to you is happening to YOU,plus having to deal with family commitments ,sometimes it doesn’t need a lot to tip us over the edge.Just trying to be strong can be an effort sometimes,just try and remember that YOU are worth it!., much love,xx💐💐😜

[August7 in reply to Angelsmummy]

No words. Thank you very much for your kindness Xx

[Frewen1]

joining in with the others’s sympathy as much as the wise medical and professional advice. Very best luck and warm wishes for improvement. X

[August7 in reply to Frewen1]

Thank you Frewen, much appreciated Xx

[Smithie49]

Dear August7. I am aghast at hearing about your pain. I do hope you find a solution. If it's of any comfort, I've had no problem taking methotrexate which I was extremely anxious about taking. I wish you all the best and a speedy outcome 🙏 ❤

[August7 in reply to Smithie49]

Ah thank you for that ..really positive😊

[Pixix]

sorry if this sounds negative, I don’t mean it to! I broke my coccyx 9 months ago, & am still suffering, six months ago I had a steroid injection directly into the area which helped, but I was warned by my Dr that Coccydinia can last for life…maybe google it & see if it fits your symptoms? The other thing your words remind me of is ‘my’ sciatica! Maybe think outside the box a bit & see if some things may not be PMR, but, like your osteoporosis, something that need to be looked at, & treated, separately. At the same time, listen to the sage advice from PMRPro & DL, & follow their suggestions. Good luck, & hugs, S x

[August7 in reply to Pixix]

Thanks Pixix I’ll do that 😊

[Louisa1840]

Oh August7 I do so feel for you in the load you have to bear! Know that we are all with you and supporting you in so far as we can. I would not hesitate to up your pred dose to something that makes life more tolerable. I would also seek second and even third opinions and don't be brushed off with medical professionals with no empathy. Having said that, I know how difficult it is to get into anyone so we have to take what we can get sometimes! I am sure the methotrexate injections will help, so as PMRPro says, you DO have a plan. Having some sense of being in control is SO important.

I was talking to someone today who has had PMR for 30 years and is on Leflunomide which she says has helped enormously. She is down to 1 mg of pred daily.

Reaching out to you with prayer and all positivity.

[August7 in reply to Louisa1840]

Louisa thank you. I value the advice and kind words. Bless you Xx