Giving In

[Maggieart]

Tonight I just had to give in to whatever could stop the pain. I try very hard not to take too much of anything, knowing my body will just want the same, if not more. I am even careful with Tylenol Arthritis, taking it only every 3rd day or so as a treat. Meanwhile, I just push through the pain.

I have been on this journey for 4 years now. I was able to stay at 4.5 mg of pred for the last year - even tapered to 0 for a little while in the fall - but for the past several weeks I have been miserable. I resist upping my pred because I don't trust that I can go back down without problems. Finally I went to 7 mg for the last 4 days. I have osteoporosis.

I work 24 hours a week. I can't pay my bills without it. I live alone(with my two beloved pets -cat and dog). Fortunately, when I am working, I am able to keep my mind off of the pain, so it is a blessing. But the last 2 weeks have been so painful. At 2:00 this afternoon I took Tylenol Arthritis, but this time it did not do the trick. So I took 1 more mg of pred tonight. That makes 8 mg today.

In addition, I drank extra glass of wine tonight. I am very disciplined about my wine - 1 and 1/2 glass a night. I make a bottle last 3 days. The least painful part of my day is from @ 6pm - 10 pm when I relax with my wine.

I am posting all of this simply because I know you all get it. I function pretty normally ( grandkids, friends etc.), but no one around me really knows the pain I am in fairly constantly, even though I have described this condition to them. I just don't want it to define me.

Thank you for providing a forum for release. I am hopeful that I sleep tonight for more than 2 hour intervals. I will decide how to handle tomorrow, tomorrow.

[random901]

I'm with you here, maggieshively. Two particularly miserable days when my whole body feels like it's been jarred, everywhere hurts. Taking more painkillers than usual rather than increasing my current 17.5 preds. Family, apart from my aged father (also experiencing pain from cancer and stoma prolapse) have no idea of the nature and level of pain and fatigue. It's just me and the beloved dog here. He understands, and pointedly brought me one of his breakfast biscuits just now. I'm still in tears ...

[Maggieart in reply to random901]

Love this! Yeah, my dog and my cat get it. Feel it.

[Indigo2417]

Can’t help with your condition or medication, but I do understand about only sleeping for 2 hour intervals. It does wear you down. Hoping you get some relief soon.

[PMRpro Ambassador]

If your pain is due to PMR then it is pred you need to manage that, not tylenol. Normal pain killers just don't do anything for PMR, you have to deal with the source of the pain.

And it isn't a question of "will I be able to get down the pred dose again" because if you need more pred, you need more pred.

In my time with PMR but no pred, I too found the evening with my wine with dinner the best time of day for pain.

[Maggieart in reply to PMRpro]

than you

[DorsetLady PMRGCAuk volunteer]

Although your wine may help you relax at the end of the day and aid your PMR aches, it may not be helping your sleep. Admittedly it does help many get off to sleep, but has a nasty habit of disturbing sleep.

I like a glass of something bubbly as much as the next person, but I did go off alcohol when on high doses of Pred for GCA , and never have been an every day drinker.

Perhaps you could try a "dry" period, and see if it improves your sleep pattern... although for only a decrease of sleep quality of less than 10% you might think the pleasure outweighs the downside.

See this from the Sleep Foundation - National Institutes of Health (NIH).

Alcohol is a nervous system depressant that induces relaxation, but can disrupt the sleep cycle and decrease sleep quality.

How alcohol affects sleep depends on the individual and factors like the amount of alcohol and how quickly it is consumed.

Long-term alcohol use can result in chronic sleep problems and disorders like sleep apnea.

How Does Alcohol Affect Sleep?

The relationship between alcohol and sleep has been studied since the 1930s, yet many aspects of this relationship are still unknown. One 2018 study compared sleep quality among subjects who consumed various amounts of alcohol:

Low amounts of alcohol: Having fewer than two servings of alcohol per day for men or one serving per day for women decreased sleep quality by 9.3%.

Moderate amounts of alcohol: Having two servings of alcohol per day for men or one serving per day for women decreased sleep quality by 24%.

High amounts of alcohol: Having more than two servings of alcohol per day for men or one serving per day for women decreased sleep quality by 39.2%.

[Maggieart in reply to DorsetLady]

thank yiu

[Curious101]

Dear Maggieart , so many of us are with you in sympathy today and every day. I tried to get by without pred, and was utterly miserable. The only thing that gave me a tiny bit of relief was heat - hot water bottles (reheated every couple of hours), hot showers (including in the middle of the night)... I guess it depends where in the US you are, this might just be adding heat on top of heat. I hope not! Over here in the UK it's hot water bottle season, and as well as the normal one I have a long thin one which is ideal for wrapping across my shoulders or hips or wherever hurts..

[Maggieart in reply to Curious101]

Yes. Hot water bottle, or similar, is what I will pull back out tonight. Fortunately today the increased dose kicked in and I feel pretty good. Wow, what a difference. Thank you.

[scrambledegg]

For me it’s a question of quality of life versus pred. dose and qol wins every time. I have had PMR for 8 years and now down to 7.5mg per day. I’ve tried a slow taper to 7mg twice now and MY GOODNESS the difference I couldn’t live with it.

For the great majority I understand the disease burns itself out eventually but for some it takes much longer than others.

You will eventually reduce again even if not at the first attempt

Would it be worth upping the dose more for a short spell (I think the advise is +5mg for 5 days but someone more knowledgeable on this site will correct me if I’m wrong) hoping it may mop up any of the increasing inflammation but you’d have a plan to go straight down to 7mg again so it doesn’t feel like properly “giving in”.

You have my sympathies 💐

[Maggieart in reply to scrambledegg]

Thank you for taking the time to write. It means everything. I went up 3.5 from 4.5 to 7 for the last 5 days. Today it kicked in! I just got home from work (6 hours) and I feel good. I am going to stay at this level for a few more days. Again, thank you. Especially for your honesty about tapering.

[DorsetLady PMRGCAuk volunteer in reply to Maggieart]

Ditto to PMRpro’s comments re length on increased dose.

[PMRpro Ambassador in reply to scrambledegg]

We usually say add 5mg to the dose where you flared for 7-10 days, if necessary 14 days maximum. 5 days is often not enough so a bit soon to declare it isn't inflammation causing the problem.