Feeling apprehensive and a quick up date

[KinnearD]

Day 16 on prednisone and saw the doctor today after she had consulted with the rheumatology department. There was concern that I hasn't achieved enough symptom control on the 20mg. We had started at 15mg then increased to 20mg and I tried splitting doses to get better 24 hour coverage. Anyway things have been improved for the past six days taking the one dose 20mg within the 2am -3am window though I am quite sore from midnight through until the prednisone takes effect. Since the inflammation has not reduced according to the lab results three days ago, the GP gave me a thorough checkup plus sent off a urine sample and I had a chest xray today. No sign of anything more sinister. My symptoms are classic PMR so we figure that I just need more time for the prednisone to take control. My apprehension? Husband left a week ago in the midst of all this to see his ailing 94 year old mother with whom he has had little contact for many years. I think it was a welcome escape from dealing with the reality of me being sick and I did feel abandoned. He is returning to NZ in an hour or two. It's midnight here. She died this morning in Australia Frankly I just don't feel up to handling his loss. It's not nice to say it, just feels like I need emotional space to stabilise. Sorry. Guess it feels so selfish that there's nowhere else to put it out there. I know it will be okay...just feels hard

[Mary63]

Have you tried a split dose at all? To counteract the discomfort from midnight on? The perceived wisdom seems to be 2/3 of full dose when you wake, and 1/2 early eve ( or a couple of hours before you find symptoms return. So for you that might be 6pm. Some people find sleep more difficult with an eve dose though.

How difficult for you that you ‘ought’ to commiserate with your husband (even though he rarely has contact with his mother) at a time when you feel so rubbish. You suspect he was struggling to cope with you and your illness at this stage anyway. So I expect you are pretty hacked off with him. Not surprising. Is it possible to non judgementally discuss it all? Maybe write him a letter explaining how you feel, so it doesn’t end up in a massive row and you are still no further forward ..just MORE pissed off with each other!

Has he read anything about PMR. I think there is a fantastic leaflet by the NE group which he might find helpful.

I feel for you both.

[KinnearD in reply to Mary63]

Thank you...yeap, pissed off and shocked too because he seemed to be in this with me. Our son came down to help and that seemed to trigger the escape. It doesn't help any that her fall this morning and subsequent death justified his actions. I needed to put my ignoble thoughts out there. In terms of the pred. splitting may have contributed to the lack of symptom control so I'm staying consistent with the one dose for another week.

[Singr in reply to Mary63]

What leaflet is that. I love in the uk. Wondering if I could get access to it.

[PMRpro Ambassador in reply to Singr]

pmr-gca-northeast.org.uk/

Look under Support Us and Our Little Shop. There is a booklet which mainly comprises what I tell you all the time (I helped write it) but also a DVD (nothing to do with me) that was launched 9 years ago to help patients and their families/friends understand what PMR does to us. They do also ship abroad I think.

[Zofitmogelijk]

Hi Kinnear. Hoping you don't hold it against me saying this, but can you please try and have some consideration and patience for your partner? There is a lot going on in your life, for you, it is a life changing event. For him, dealing with your illness and loosing his.mother is heavy too. Maybe.he just need some time to gird up his loins. Hope. you can work it out ❤️

[KinnearD in reply to Zofitmogelijk]

A timely reminder to put on my "big girl pants"( if I could only bend to do so! I did and I will as he currently catches up on much needed sleep. It's not all about me and usually that's my stance . Thank you perhaps e can blame it on the meds. Xxx

[Zofitmogelijk in reply to KinnearD]

No need to speak about blame. In the beginning it is all so confusing and you can't trust your body anymore, and not sleeping good at night, all contributes to feeling alienated. I do not know how you are used to cope in this key moments in your life but hope sincerely that you and your partner grow closer eventually. Wish you all the best

[Wraysbury]

I’m sending you a huge hug and hope that through all this you will be able to be kind and caring to yourself. Bless you

[DorsetLady PMRGCAuk volunteer]

Hi,

Very difficult time for both of you, for differing reasons obviously. But hopefully you can both get through this together with each having sympathy and love for the other.

Best wishes.

[PMRpro Ambassador]

The most recent guidelines say "the lowest effective dose in the range 12.5-25mg"

rheumatology.org/Portals/0/...

Maybe you are a 25mg person - and you have been under a lot of stress.

It is hard. I know you want to crawl into a corner and scream "leave me alone" - even now I have times I want to do it too. However, sometimes our better selves have to crawl out of that corner. Mine is frequently VERY reluctant and does it with rather poor grace. But I usually manage.

It was his mother, we only have one, and he may well also be suffering guilt about lack of contact in the past. And maybe also guilt about leaving you to cope. albeit with a son around. However you or any of us may feel, PMR is not life-threatening, thank goodness, and while you are struggling at the moment it WILL get better. She won't.

Please try not to make your (to us) very understandable resentment overwhelm the return of your husband. He will be feeling just as awful as you if he is a normal human being.

So shout and scream in a post to us - you may even find that you don't need to post it. Or can post it and delete it quickly because you have let it out. And when you need to - post it and leave it. Someone will hear you.

All the best

[KinnearD in reply to PMRpro]

All good wisdom and encouragement waking to a new day and thankfulness to do so xxx

[SnazzyD]

It’s always difficult when each person in a partnership hits crisis at the same time. It can turn into a suffering Top Trumps game, but sadly there’s no scale or points system. I think it is what it is sadly and ruminating and feeling angry is not going to help you internally I’m sure. It is common for people to struggle with understanding invisible chronic conditions. Damned annoying, but there it is.

[Linny3]

I take Rayos (enteric coated) The way it is prescribed is to take full dose around 10pm. It is suppose to help with the morning pain and stiffness. It does help a lot. However, about 1-2 pm the next day I am starting to hurt a little. I am currently on 12 mg, So, I started taking

8mg at 10pm and then I take the 4mg between 8-9 am the next day. That seems to be working really well. Rayos takes about 4 hours to work so on really bad days I may take an extra mg of regular prednisone (which works within hours.) while I wait for the Rayos to kick in

It is all very tiresome but we do what we need to do to stay out of as much pain as we can.

I also have fibromyalgia so that kind of muddies the waters a bit. It can confuse things because they are both fatigue and pain syndromes.

Good Luck

Lin

[Hidden]

My Rhuemy thought I'd have a miraculous pain management system immediately when starting the preds, didn't happen for me in fact felt worse after taking the pills. I split mine, taking half at around 6am then the other half at 12,30 having an afternoon knap after. I gradually began to feel better, now after 5 months and slowly reducing I'm coming out of myself. I felt a lot of resentment towards others that I had helped in the past but did not even come to see me in the dark days. I now accept that people are people and I am a more sympathetic woman having been a 'oh for goodness sake stop moaning' type of person. I understand that you felt abandoned by your husband at a time you needed him most but in the future I'm sure both of you will be glad he went to see his mother just before she died. Others told me on this forum that I would feel better in the future and they were right. There is light ahead Kinnear you will find the best time for you when you take your preds and the best advice here is listen to your body, if you are tired rest. Btw I can't break the afternoon knap habit, I think my body still needs it! xx

[KinnearD in reply to Hidden]

Thank you. I think my emotional reactivity is partly Pred fuelled. If only it would get working in the pain reduction area where it should! Hopefully with husband home and things more settled getting plenty of rest the Pred will get a chance to do its thing. I am staying on the 20mg single dose somewhere after 2am until Monday when I check in with the GP again. Blessings

[Marijo1951]

I have to cope with both GCA and PMR while living alone. I know from experience that it's better to be single than to live with a hostile or abusive partner, but I would like a nice one even if he wasn't 100% understanding.

[Pongo13]

Now if there is one thing I like to do it is to put on my own pants... So having had a pelvic fracture, followed by a hip break, followed by PMR - I learned a "grabber" (the thing that picks up litter etc that old folk have) is the perfect aid. It was very useful when I couldn't bend or move prior to PMR diagnosis.

[PMRpro Ambassador in reply to Pongo13]

Yes - I remember having to lassoo a foot with my underwear!

[Wraysbury in reply to PMRpro]

I had to use my mothers Helping Hand to try and lasso my foot! I can hardly believe it now!!

[Jackoh]

I'm sure you are right KinnearD that the pred although at the moment not completely controlling the pain may be fueling the emotions and sometimes I know I have felt an intensity of an emotion that I wouldn't have particularly felt pre pred. Just try to rest up as much as you can, take it hour by hour and I would try to think about what you say before you say it. It's really hard to take back things we've said once they're out and folk get hurt. What's done is done this can be your new start as he returns home. You've managed to get it all out , which is good, now perhaps is the time to try to let go of understandable resentment and reach out. Best wishes

[carolpatriarco01]

I totally understand where you are coming from...if the tables were turned you wouldn't leave him... I can tell this from your post!!!! There's more to your story and that's why you are upset!!! You have every right to feel as you do... and I wonder where all of the people went in my life also who I was there for with meals etc.... A card would be nice. Hope that you begin to have less pain soon.

[PMRCanada]

I feel for you and your situation KinnearD.

Everyone touts pred is a “miracle” like drug and you probably feel as though it is not living up to its reputation in your case. I believe there are a number of factors involved, the bioavailability of the drug and how you process it, the patients weight, when you take it and how (one dose or split), overlying stress, exercising too much, not getting enough rest, pre-existing conditions. I truly hope you find your own unique solution that provides you with optimal pain relief.

I started at 20mgs 4.5 months ago, and while it provided about 75% relief, when I tapered down to 15mg I was sore and stiff each morning till about noon, I split my dose for awhile which helped, but for the last month or so, as I continued to taper down, I went back to one dose that I take between 4-6am when I get up to use the washroom. I also take extra strength Tylenol or Tylenol 3 (with codeine) if I am in considerable pain (I have pre-existing chronic knee injuries, meniscal tears and OA/ cartilage deterioration in both knees) which is causing more pain as I lower my pred dose. Also I’ve adopted a low carb, sugar, salt diet which has helped and the better I eat, the better I feel.

Having the support and care from loved ones also greatly improves not only how I feel physically, but especially beneficial when I’m having dark days. I have and utilized many supports, as I realized that my husband was going through his own journey of shock, anger, and concern (especially during the 5 months pre diagnose when we had no idea what was going on). We had just married 2 months before the onset of PMR symptoms so this was the first major issue we dealt with as a couple. He had since grown much better as a support, although he still tends to push exercise on me being fit himself. He no longer tries to fix me, rather he listens, encourages, uses humour and gives me time and space to rest if I need it. But we didn’t carve out this dynamic overnight.

You are still very early in your journey seeking solutions and support. Your husband is also in a vulnerable place at this time. You likely need each other and wonder how you can give at a time when you both need suppott. Give what you can to one another, and try to explain when you can’t. Articulate what you need, sometimes it’s a need to simply cry out of fear and loss, sometimes it’s space to avoid conflict from escalating. Use your common ground as a place to start to connect and communicate as you travel on your respective healing journeys.

Stick with us and feel free to ask anything, to vent and (eventually) celebrate achievements. The folks on here are invaluable! We understand what you are going through likely better than anyone else because we have a similar lived experience. What you are feeling is very typical given your situation,

Things do get better, I can say that 5 months post diagnosis. Listen to your body and do utilize all of your supports. We are so fortunate that PMR is not fatal, and that it goes into remission. It is hopeful when I hear from others who have made it through to remission. They are resilient and survived, and you can to. Take good care and keep us updated,

[KinnearD]

Hugely helpful, thank you. I am a small woman so did expect to manage on lower Pred. My husband has also read your response. I know we will get there and that others have much more difficult situations. Bless you.