Now what?

[Hunter134]

Not sure what to do.I am struggling with relapses.I got my 3rd vaccine which I felt my inflammation raising so I went to 15mg from 10.That seemed to work til now.My symptoms are recurring once again.I don't think iam ever getting this disease under control.

[PMRpro Ambassador]

I have mine under control - but only by taking enough pred and for me that means above 10mg. I was up to 19mg last autumn when my husband was so ill, Without that stress and the physical requirements I have been able to reduce back to 12mg without feeling any worse. 11mg might work - 10mg doesn't! But remember - YOU have to do your part by lifestyle changes and adjustments. Learning to say no is an important part - do you?

[Hunter134 in reply to PMRpro]

I have been under alot of stress with caring for my husband as well.Sometimes it is overwhelming.He has been falling alot more than usual.Had my nephew overdose this month as well.I was still on 10mg.So should I go up to 15?I get bloodwork next week and my Dr will call iam sure.

[PMRpro Ambassador in reply to Hunter134]

No need to tell me about the stress of being a carer - been there all too recently - but you do have to fight for you too. And you also have to choose your battles. Unless you can function you are no use to anyone - so if that means more pred, it means more pred.

[DorsetLady PMRGCAuk volunteer]

A month ago you wrote that you had flared and gone from 8mg to 10mg, but that wasn’t working…PMRpro gave advice - but what did you do? Anything or nothing?

Was your vaccine after last post? And how long did you /have you stayed at 15mg?

You need to be a higher dose long enough to get things under control - see this link for usual procedure of how to treat flares -

healthunlocked.com/pmrgcauk...

If 15mg isn’t doing it, you may need more, but as PMRpro says you have to do your bit as well.

EDIT

Just seen your reply to PMRpro -sorry about your stress - suggest you go to 15mg and get PMR back control

[Hunter134 in reply to DorsetLady]

I stayed on 15mg for a week then went back to the 10 mg.Seemed ok for a month but now I feel pain again.I do think my Dr didn't give me enough of a starting dose.The 1st time I got pmr I was on 25 mg.This time aft 9 yrs he put me on 15 mg.I never felt it took my inflammation down as much as it should.It took a month to feel any different.

[DorsetLady PMRGCAuk volunteer in reply to Hunter134]

Just edited first reply -as you were writing.,Try the 15mg again - but think with your stresses you may need more.

Do please talk to doctor, you obviously need to be well enough to cope with your husband. Is there any way you can get extra help? It is very debilitating when you are unwell and are a carer for a loved one…lots of us have been there/are there.,

🌸

[Hunter134 in reply to DorsetLady]

I think with covid it would be hard.I have a daughter that's double transplanted so she can't help.I have another daughter who didn't want the vaccine.My two sons live out of town.One son is dealing with degenerative discs and off work.I think it's just too much at times.Thanks for your reply.I ll talk with my dr who I don't have much faith in.Of course he wants me off prednisone.

[DorsetLady PMRGCAuk volunteer in reply to Hunter134]

Oh dear - Dr may want you off Pred, but that’s obviously not going to happen any time soon. Not sure of situation in Canada, but if nobody in family can step in and help, how about outside care agency? Is that a possibility?

[Hunter134 in reply to DorsetLady]

Iam not sure if ppl can come in.In Canada we 're locked down at the moment.Iam thinking I may order my groceries on line.Thats easier.

[DorsetLady PMRGCAuk volunteer in reply to Hunter134]

Okay, but good idea to get groceries online…

[Hunter134 in reply to DorsetLady]

Thank you for your reply❤️

[Blearyeyed in reply to Hunter134]

You do sound like you need help and it doesn't need to be immediate family , even during a Lockdown.

I would definitely look into all the social care and community ways in which you can get help to reduce the stress and pain creating physical activities of you and your husband.

Groceries online is a good start, but you could possibly do with some sort of funded Home Help.

If your husband needs care 24/7 and is prone to falling then contacting his doctors and getting social care and physical therapy assistance for him will be vital for both of you.

Having to lift someone up from a fall or help them in and out of bed or a chair is not something you should be doing while trying to get control of your own medical condition.

Your children may be busy and unable to help with the practical physical work ( which could add to your case for assisted help) but they should be able to give you some time helping to investigate what is available for you, and help you to fill out any forms.

If they can't you can always get help sorting this out through the Government department or hospital Patient Assistance in your area. Citizens Advice may also be able to help. your GP surgery may even have the information to help you.

It's good to ask for help and it doesn't have to be permanent but it could give you a lifeline until you have your own Health and Pain under control.

Returning to the 15mg of Pred for a few weeks and then going back to a slow taper method will help with the medical needs but unless you get the stress of both mentally and physically dealing with the care for your husband and yourself you are likely to find you will keep flaring.

You need to look after yourself , get rest and pace yourself too, and try and reduce the triggers for your pain, that's not selfish , it's not anything to feel guilty about, it will actually make it easier for you to get back on your feet and able to be there for others in the future when you are better.

Good luck and you will be in our thoughts , Bee

[PMRpro Ambassador in reply to Hunter134]

It is perfectly possible that 11 or 12mg is enough - but by dropping so soon and by so much you haven't really given the pred a chance and you don't really know.

The situation with your husband sets a new framework - it needs a different dose.

[Hunter134 in reply to PMRpro]

Thanks pmr pro.I think you are right.I need to stop worrying bout my doses and take what my body needs with the stress in my life.I also could lose some of the weight I gained since covid.lol

[PMRpro Ambassador in reply to Hunter134]

Just wanted to add to Blearyeyed's comment above - one of the things that helped me a LOT once OH was falling, not a lot but enough to make me very wary of being out of the house and very disturbing at night, was an alarm pendant. Mostly it was at night but a couple of times it was in the daytime and knowing that an ambulance and at least 2 strapping technicians would be there in a very short time was really a comfort. Our system here is different but I never had to wait more than about 15 minutes from pressing the button and they came with all that was needed to assess whether he needed to go to A&E for assessment. They also held a key if I wasn't there to open the door. Even when you may not need them, knowing they are there makes a significant difference to you.

[ubaoz]

Nothing to add to the excellent advice already given, just want to say I really feel for you. PMR has enough stresses of its own without the extra involved with caring for a fragile husband as well.

I got given the same great advice – to take the amount of pred needed for now – it does help ease things and makes it a bit easier to cope. All the best.

[Hunter134 in reply to ubaoz]

Thank you for your kind advice.I find any added pressures at this time like covid puts strain on us even more.Difficult times!

[ubaoz in reply to Hunter134]

For sure! Take care.