Chronic stress and tapering, stuck and scared to taper

[Mstiles]

I just finished reading Marjijo1951’s post about stress causing flares and I’m wondering how you all deal with stresses that are ongoing with no resolution. I’ve know there are many on here who are carers or who deal with ongoing family and financial struggles, problems with doctors, etc , plus the pandemic. Then when other issues like an incorrect bill which causes financial problems, or other incidents arise on top of the ongoing stress, how on the world do you cope? Are you able to taper and make any progress in reducing pred? I have a wonderful therapist but no other real emotional support.

I have been at 13 mg of pred going on 9 months now! I’ve been relying on my GP for prednisone as my wonderful rheumatologist left last June. My GP doesn’t know much about PMR/GCA so I’ve avoided talking to her about it because of being afraid she would put me on some ridiculous tapering schedule.

have very low income, and also family issues with my son who I live with. Neither of us can afford our own place. He has health issues. I lost my car last spring and so my independence.

I’m in California, and summer and fall we had fires and blackouts. Then the whole election , etc, nightmare. I tried to reduce to 12 a few times but had some symptoms. Always afraid of Covid and not knowing what was causing what!

Good news is I’ve had my Pfizer shots and am now protected, so I want to get going on tapering again, but I’m afraid to start! I feel pretty good except for fatigue and some shortness of breath. Have been very depressed.

I have an appointment with a rheumatologist in two weeks. Doctor’s appointments are really stressful for me!

Sorry about the long whine! I want to move forward again but am scared.

[PMRpro Ambassador]

I've been at between 13 and 15mg for the last few years and I'm sure because of stress - I do try reductions but more than 1mg less just leaves me feeling awful and I don't have any choice about having to function. Most of the stresses are a pain but we have no financial worries and that is a blessing, might be a bit different if I were left alone but I doubt it would be insurmountable. I don't know I have a way of coping - it is what it is and I have to get on with it - bred in me from the 1950s maybe?

[Mstiles in reply to PMRpro]

Yes just do what you have to do. I worry about the long term effects of so much pred.

[PMRpro Ambassador in reply to Mstiles]

I can't live a decent life without it at present - I'd like to but not on. I've given up worrying about that - and in fact I don't have any identifiable problems due to pred. I work hard on diet - low carb so no real diabetes risk and it helps reduce weight problems even if I could do better. No sign of osteoporosis. After over 11 years the total dose is very high - but again it is what it is and I can function.

[Mstiles in reply to PMRpro]

You’re working hard on staying healthy👍 I did well stating g on low carb until the holidays and then I really went off. Going to see what my A1C is next week. Hopefully not too bad!

[123-go]

I'm so sorry that you are feeling this way, Mstiles. From what you say it's clear that you don't know which way to turn at the moment. Could you look on the internet to see if there is a support group in your area so that you can connect with other sufferers of depression? It's likely that there are more than you may think there are. By doing this you may find ways to move forward and you won't feel so alone with your anxiety and worries which aren't helping your PMR/GCA.

I really feel that you should talk to your GP about your depression. She may be able to refer you to someone (or a group you could join) who can help with that if she's unable to deal with it herself.

Do try not to stress about your appointment with the rheumatologist. If you write down reminders for yourself of anything you want to ask him or tell him in the time you have before you see him your mind will be more organised and you won't be confused about what you want to say or forget anything. I hope things go well for you at your appointment.

[Theziggy]

Don't forget it takes 12 weeks before the Pfizer jab becomes effective

[Megams in reply to Theziggy]

~Twelve weeks = 3 months, that's quite a time. Thanks for this useful information as the Pfizer is the vaccine only just arrived & being used here in NZ. I hadn't read that info + we are coming into winter in a few months time...........hmmm

[PMRpro Ambassador in reply to Megams]

It depends on the gap between shots. In the UK it is 12 weeks and full protection is only achieved at least a week after the second shot. In fact, there is a degree of protection for healthy people after 3 weeks with only 1 shot but it is by no means as good as after 2. A study has been done in cancer patients which shows they have next to no protection even after 5 weeks with one shot, a shot at 3 weeks has a good effect. One has to assume that something similar will apply for all immunosuppressed patients but cancer patients with solid tumours have always been considered a major risk group.

[Megams in reply to PMRpro]

~Great info - thank you PMRpro ~

[Megams]

~Feel for you Mstiles..... you sound corned.I have only recently been reflecting on stress & its damaging effects on my system with sleeping adrenals/& or now in Addison territory.

We need to dig a little deeper & find other ways to cope.

Mediation I do daily & living in the moment instead of thinking ahead.

I have joined a support group - have a precious family member whose mental health is unpredictable.

I set aside a short time of the day purely for ME - this is something I find difficult to do but feel better for having done so.

Remember we are always here for you to vent - this is another of my vital support groups - I count my blessings despite it all.

Take good care in meantime ~

[Karenjaninaz]

Hello, at this higher dose that you’re taking I just felt a little crazy. It does help to reduce maybe a milligram at a time. We have a protocol here for a very slow taper that makes it easier to handle. Like in the airplane we have to put The oxygen mask on ourselves first before we care for others; it’s the same with PMR because we cannot give what we don’t have. If possible don’t take on any extra stress like getting a puppy or an outside commitment-Or taking on another task. Sometimes, we’re saying yes when we want to say no. This happens in our lives and we don’t realize it and then we wonder why we’re going crazy. That may not be your case; I know I can relate to these things - except the puppy.I have a medical background and until I’m off prednisone totally a while - not yet, I’m wearing an adrenal insufficiency silicone bracelet that I got from Walmart online. That is better than a card in a wallet. Speaking to endocrinologist much better than a GP in the States. What State are you in? I live in New Jersey. If finances are a problem investigate whether there is any help in your State. My mom‘s income was very low when she was on Social Security; She was able to get help with prescriptions, energy costs, transportation to the doctor. and property tax relief.