Going Backwards

[jevuki]

Was doing DSW and got down to 10Mg from 20MG and everything fell apart, legs, knees back arms shoulders all screaming at once. Dr put me back up to 20 for three days if pain goes away need to stay there awhile and begin all over again. I just do not understand why this disease does not leave us. I am getting very depressed

[PMRpro Ambassador]

How long have you had PMR?

Top experts suggest first trying the dose where the flare happened plus 5mg. Which saves having to reduce so much and is always worth trying first.

[jevuki]

2 years I have been dealing with this, I had major dental issues from Prednisone at 20 mg and now I am scared for the remaining teeth

[PMRpro Ambassador in reply to jevuki]

I hate to say this because I know you don't want to hear it - but 2 years is just starting compared to many people. Only about 25% of people are off pred in 2 year - whatever the doctors try to claim. A good third of patients still need pred after 6 years. It took me well over 3 years to get reliably below 10mg - however I tried.

As to why it doesn't leave us - we'd all like to know that! But other a/i disorders are far worse, some kill, many cause organ damage. PMR is horrible - but it could be worse.

[jevuki in reply to PMRpro]

I understand others have had longer that is not my issue, I lost my upper teeth to the prednisone it attacks my jaw (my Achilles heal as the dentist says) everything was fine and boom the bottom dropped out I reduced severely quick to 0 and crashed and burned. Went back on an doing dead slow wean and just do not understand what happened. Going back up to 20 just scares me to death...... I appreciate all the comments on this forum and it is so helpful to have a place to vent to people who understand what we are dealing with.

Thank you for listening

[PMRpro Ambassador in reply to jevuki]

No I didn't think it was but just trying to say it's early days.

Do you REALLY need to go to 20mg? If 15mg works now, start with that.

[jevuki in reply to PMRpro]

He told me if 20 makes me feel better than I can try to drop 2mgs at a time until it starts up again. My sed rate was high as well up 15 points over last month I will keep you posted by next week to see where I end up landing....thanks so much for your wisdom

[DorsetLady PMRGCAuk volunteer]

Hi ,

Sorry to hear you are having such a tough time. Are you sure it was the Pred causing the problem with your teeth? You weren't on Alendronic Acid were you?

If it was the Pred that I can understand your problem with going back to 20mg - why don't you try 15mg first as PMRpro suggests, you may find that's enough. No point in taking more than you need.

No wonder you're depressed with everything, but I think that going up and down with your doses hasn't helped, your body doesn't really know whether it's getting a consistent dose, and is maybe reacting more that someone who has been able to have a more stable approach.

Do hope you find the 'right' dose for you soon, and maybe stick with it for a while and allow your body to settle.

[jevuki in reply to DorsetLady]

thanks Dorsetlady, yes it was the prednisone I have always always taken good care of my teeth My dentist was so upset when I went for 3 month cleaning I get it done 4 times a year and in that short period of 3 months it eroded my bones and I lost them all on top. My doctor also after looking at my dental records confirmed. So I am scared to death right now but admit in just two days I am feeling better. I will try to get back down doing the dead slow wean again and when I feel anything I will stay at that dose until I can reduce again. The doctor suggest Methtrexalate but I am not opting to loose my hair as well. I am still working and cannot deal with wigs at this time (lol) At least there is something to laugh at.

[DorsetLady PMRGCAuk volunteer in reply to jevuki]

Agree you don't want to add another drug in, unless it's really necessary.

Hopefully if you can get stable this time around your tapering will be easier, so no need for the MTX.

Take care.

[jevuki in reply to DorsetLady]

thank you

[Slosh in reply to DorsetLady]

My teeth have been unusually sore since Pred. Am taking D3 and its co-factors.

[jevuki in reply to Slosh]

Hi Slosh, yes I take 8000 units of D3 daily had my levels done and am at 73 The vitamin D did not stop the pred damage

[HeronNS in reply to jevuki]

You also need Vitamin K2. Vitamin D does not guide calcium into the bones, that's the job of Vitamin K2 (and magnesium).

[jevuki in reply to HeronNS]

Thanks Heron, I do take magnesium daily I will talk to doctor about Vitamin K2

[HeronNS in reply to jevuki]

Just a heads up - your doctor may not know anything about Vitamin K2. S/he may try to tell you that Vitamin K has little effect on bones. There is a big difference between K1 and K2. A rheumatologist I met at a bones clinic told me research had shown Vitamin K did not help bones. She is, in fact, completely wrong, referring to research which did not use Vitamin K2. Japanese research proves that K2 helps!

nattomk7.com/about-vitamin-...

authoritynutrition.com/vita...

[jevuki in reply to HeronNS]

thank you Heron

[SheffieldJane]

My first thought was are you on Alendronic Acid? Your teeth problems sound like the fears I had when I refused that drug to prevent osteoporosis.

I understand that " last straw" depression. It all feels so unfair. I hope it lifts soon. I seem to dip in and out of it and am much worse after seeing indifferent doctors and if I'm tired. Also if I see a photo of what I look like now on someone's phone, that tips me over. Ignorance is bliss.

[jevuki in reply to SheffieldJane]

I agree I feel the same way. The old photos were me on the outside but not what I look like now

[jevuki in reply to SheffieldJane]

Hi Jane, no I do not take Alendronic Acid nothing but vitamins and prednisone