Its been a shortish 4 months but very very rocky ride for me starting at 20mg pred now trying to stay on 2 mg The side affects have been fearful. Disorientation distension ongoing problem with my lips and stinging small yellow spots. tooth paste anything hot aggravated it and my lips kept sticking together Exhaustion poor sleep hair loss and even my eyes don't seem as good as they were. For me I have to get off this poison as soon as I am able to. Anyone else feel the same?
Afraid I can't agree with you - pred gave me my life back after 5 years of pain and immobility.
I am glad for you. Its not really a case of agreeing or not it is what ones body tells you with its a reaction to what you put into it. We all so very different in our responses so its hard to get a medication that fits all.
There are a few AI systemic diseases that include mouth problems, even good old Candida (thrush) which is an ongoing problem for me (but no ulcers).
patient.info/doctor/oral-ul...
20 to 2 mg in 4 months is a drastic reduction! Has the PMR not flared?
Exhaustion and PMR go hand in hand.
I’ve had several side effects, poor sleep, hair loss on my head, overgrowth in other areas! My eyesight is variable (improving on lower doses) and the start of cataracts. Acne. Weight gain (which I consider a bonus). Brain fog and loss of concentration and an appalling memory. But all things considered, I vote for pred, alternative is pain and inability to function.
Hello. Sounds awful, however I wouldn’t rush to blame it all on
Pred. Sounds like you could have another auto immune condition on top and it is possible that some symptoms are due to withdrawal with such a fast reduction
Hello I found medication came to me in carrier bags full then I read then I actually managed to see my own doctor. There was change. You see I am 81 and have been on Warfarin for 20years I am in the few that self test so I am very aware of changes in my body and responses. Two Pharmacists have told me the mouth and lips problem is Preds. The disorientation etc., also preds. Everyones body is so differen t and I feel the warfarin which is essential has been severely compromised by the Preds it is now settling on a low dose ie 2mg. preds. I hope to be off entirely by the end of the autumn of the latter. Yes my shoulders ache but I am no longer in a tired fuzz. I can go out shop a bit enjoy my friends company. Yes I rest a lot more I used too but hey that's ok.
Some life quality back.
Sorry did you say that you started at 20mg and in 4 months you are down to 2?? Perhaps it is all because of the too fast taper??? Not sure about it. I want to be off the prednisone but it has done SUCH GOOD for me as far as pain and PMR symptoms that I am only grateful for it. I am afraid mostly for my bones... but doing weight bearing exercise and walking a lot. and Tap dancing. the other side effects will go away eventually... but perhaps you have moved too fast??? Good luck though and I do Hope you feel better soon. !!
Tap dancing? I'm impressed.
Haha. don't be! It is old lady and old men going slowly... fulaaaaap shuffle balllllllll change. But we listen to GREAT music. and laugh and mainly get those heels tapping which is so good for our bones! and 1 hour class is about 5000 steps. NO LEAPS no HOPS. she doesn't want anyone falling. She says good for your balance your brain and your bones!!! and I believe it is. I will find out with my next dexa scan in Nov!
Valentina, please don't see pred as poison. It is the only thing that controls PMR symptoms. You have to come off it very very slowly - see PMRPro posts for excellent advice. Nobody likes to be on steroids but the alternative doesn't bear thinking about. I'm no expert but 20mg to 2mg in four months sounds very quick, too quick. My doctor only reduces my pred by 1mg every two months and then only if I'm feeling ok. Please persist.
Poor you Valentina1, you really have had a horrible time of it. I recognise all the side effects except the yellow spots. Definitely better now I am 7 mgs, after 2 years. The others have put forward the usual theories. As you say, you know your body. My concern would be the danger from unchecked inflammation morphing into GCA. Be alert for those symptoms won’t you?
Many thanks to you I have valued your advise. My major difficulty is the warfarin which indeed is affected greatly by preds. But the former is more important to me. Two Pharmacists have come out to me when collecting these preds questioning it. That's why I need to come off if I can. In the first place it was a belt and braces by a lovely GP new to his rolewho followed the computer advice. I didn't know had indeed no idea of how this would affect me. But as with warfarin I learnt and continue to do so. If one didn't self test on preds it would be awful and I consider dangerous as the fluctuations in Blood viscosity for me varied every day and sometimes to dangerous levels. Folic acid is helping and zapain when needed plus rest.
And do you know what I live in a fabulous beautiful part of the country and have a garden which I built and cherish.
Again thankyou Jane.
I was given rivoroxaban instead of Warfarin which is a new type of anticoagulant. I am sure it has lots of problems too but you do not need the checking that Warfarin requires. I am not necessarily recommending it as my sister was reading the side effects!
I am also on a NOAC - but Pradaxa/dagibatran (or something), I switched as a result of wildly fluctuating INR values. I had been fine on pred and a warfarin-type drug for 3 years and then it went mad. I have no problems at all with Pradaxa. The potential side effects aren't any worse really than with warfarin.
Hello Valentina,
You have come a long way in 4 mo. from 20 to 2mg! ( which I think was too fast)...Whatever suffering you have endured, just think you are in the home stretch. I never was on more than16mg; got down to 8mg. and temporary vision loss one eye for several minutes( central retinal vein occlusion), presumably GCA. Therefore had to go back to 16mg again to protect vision.
Now back to 8 mg. again; my doctor plans to start tapering me at my next visit in 2 months.
I am very ambivalent about Prednisone; it was a God-send when symptoms began in Sept., 2016.100% relief in 48 hours. Nothing hurt for the first time in my adult life, not to mention the energy it gave me. In some circumstances, it is a life saving drug to be sure.
If we are in our later years, does it really make a difference if we are 8mg or 4mg or 1 mg??
As I said, in an earlier post, I am going to try tapering using medical marijuana to help, which is known to reduce inflammation and pain dramaticlly.I have an appt. with a med. marijuana authorized physician on 7/16. I understand medical marijuana is easy to qualify for now that New Jersey's governor has proposed a bill for legalization for recreational pupose. Doctors want to cash in before no-one will need a prescription.
It is a bit of a bureaucracy, and takes about a month before you can go to the dispensaries. The peronnel will help you choose which strain of the plant works best for particular ailments; ad give you the literature. You are limited in how much you can buy per month.
My daughter has RA and, swears, it's the only medication she needs.
One has to be re-certified every 3 months which comes to some hefty fees.
It's worth a try to get off Prednisone. I am already using CBD oil, and lotions; there are sublingual drops, capsules, balms, candy and cookies and smokeables. I was surprised by how effective and calming the balms
and lotion were.. (I am lucky to have a husband who enjoys massage, giving and receiving. ) And that is without the THC, the psychoactive part of the plant which can be no more than 3%. in a CBD product. It can be bought online and is not illegal in any state or country to my knowledge.
Good luck , Valentina, in your quest to get down to 0. Wishing you all the best.....if your suffering has been for an accomplished goal, it will have been worth it. If not, you can always ask to go up a bit and start experimenting with the CBD products on your way down again.↕↕⬇⬇⬆➡⬅
Thank you for your good wishes and I in turn wish you all the best. I live on my own so being able to cope is very important to me as I wish to remain independent. I guess in 81 years 3 DVTs amongst other things I will make it . I think I am probably what you call stubborn which is a kinder term than others would choose and like to be in charge of my own body which I achieved with self testing for 20years.
My grandson died last year of Methadone poisoning it was a terrible death and did knock me for six hence the last year of PMR which I feel was a reaction.
Thank you so much for your kind support and information.
Valentina 1
Update PMR 2 months since diagnosis
I'm lost
I'm lost
Confused and lost
THREE MONTHS ON ...
