PMR symptoms or pred?

[Alohaoillady]

Diagnosted August 2023 with PMR. Started at 40 mg pred. Now at 16.25 mg. I have gastritis, insomnia, increased urination, exhaustion, trouble thinking and remembering, no libido, blurry vision, diarrhea and apathy.

Is this PMR or side affects of pred? How do I keep going other than sheer will power?

thanks for being there as I type at 4 am after 2 hours of staring at the ceiling. Deb

[SnazzyD]

Yes you can get all these but some of them can be helped. Point by point

1 Gastritis - replied on previous post.

2. Insomnia - ditto.

3. Increased urination - yes, can be different causes such as infection caused by the immunosuppression, irritation of the bladder and urethra from the Pred and incidentally high dose calcium that is often prescribed with Pred. If you are peeing in large amounts it might be due to higher blood sugar and cutting down carbohydrates quite hard helps this. If it is mostly at night it is possible fluid retention. How much are you peeing each time and do you have any other bladder related symptoms?

4. All the brain related symptoms can be caused by Pred and will decrease with dose. I just had to keep telling myself it wasn’t me and was temporary, plus I lived day to day. It is really important to avoid trying to crack on with your normal routine in order to grasp at normality. You need rest because of this exhausted but wired state that one can be in. One can feel like another person but don’t panic.

5. Diarrhoea- Have you always had it, especially on higher doses or is it new? If it is new, along with the stomach issues, it would be worth a medical opinion.

Insomnia - other post.

[Alohaoillady in reply to SnazzyD]

I’ve started meditating up to an hour a day with guided meditations. I know I need to slow down. Hard. I could do 10 things at once. Have my 4 grandsons under 11 for the weekend right now and realize I probably can’t do that again for now. Sad. And hard to accept. But I see it’s necessary.

[SnazzyD in reply to Alohaoillady]

Well done. Unfortunately these conditions do bite back when we don’t listen to our body. However, the Pred sends mixed messages that can induce us to over do it, aided and abetted by our wish just to be normal again.

[PMRCanada]

I truly understand where you are coming from having experienced most of what you have listed. It is quite a struggle especially at the beginning. You’ve also started at quite a high dose of pred for PMR and that will surely create some side effects/symptoms you’ve noted. Some symptoms may lessen as you lower your dose (such as insomnia).

Being diagnosed and dealing with the fallout of PMR along with medication side effects can feel overwhelming, not to mention discouraging. The pred can give you lots of energy and it can be tempting to slip right back into our former routines.

I too have 4 grandsons under 12 and recently watched them for a few days/nights while my son and DIL were on their honeymoon. It was difficult and I couldn’t have done it without the help of my husband and daughter. Of all of my limitations, not being the grandma I want to be, is the most difficult. Losing my libido was also sad/frustrating as I was newly married and retired when PMR symptoms occurred literally overnight. Not the honeymoon and retirement I had planned!! We go through many emotions on this journey as we mourn the loss of our life pre-PMR.

I will say it did get better/easier with time. I learned to listen to my body, make necessary adjustments and say “no” (at times). I also grew to accept my condition and prepare myself for the long haul and exercised flexibility when making plans. Others around you may not “get it” like those of us on this forum that do. We are here for you.