I was diagnosed with PMR in September of 2022 and have followed the regime of starting on 15mg Prednisone, tapering to 12.5 and then tapering monthly by 1mg. Luckily for me before I hit 5mg, I found this site and so just as I started to feel not as good as previously I started to taper by only .5 a month. This leads me to my question.
When I was still up in the 7mg. dose area my rheumatologist insisted that I needed to use a steroid sparer in conjunction with the Prednisone to ensure I got off the prednisone as soon as possible. I have been taking Hydroxychloroquine now for 3 months and honestly don’t feel like it has been beneficial and as I taper the prednisone I feel like the side effects that are bothering me the most are more the psychological symptoms which I don’t know which drug to attribute this to.
Has anyone else taken Hydroxychloroquine in conjunction with Prednisone and stopped the Hydroxychloroquine because they could not tolerate it. Could it be that having lowered the Prednisone to 4mg. I am suffering typical prednisone withdrawal?
I am having anxiety, night sweats, brain fog and dizziness and don’t know which road to take.
Thanks so much for any advice you can give me, it always helps,
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fondofforest
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I’ve not been on Hydroxychloroquine, but have experienced the same symptoms as you since lowering my pred dose down to 6mg (currently at 5mg). Pretty sure it is my adrenals trying to sputter back to life after 6+ years of being shut down due taking pred for 6+ years.
My understanding is that it is something you must go through at this stage of tapering, and why it is recommended to slow tapering down (the lower the slower). You could increase your pred and feel better, but eventually you will have to go through such symptoms again while lowering your dose. I try not to exert myself, avoid stress, and stay at my new dose for 6-8 weeks before lowering/tapering further.
It could also be pred withdrawal as some symptoms overlap.
You may want to stay at 4mg for awhile and monitor your symptoms.
Would agree your symptoms sound typical of adrenals stuttering - have a look at this link. The only way to nudge them into life is a very slow taper, with small steps -
As others have said, it sounds like your adrenal glands haven’t started to work fully now that your dose of steroid is dropping below that of what we normally need in a day to live. Until they flicker back into life you can feel horrible like this. Do read DL’s link about adrenal function as it will explain what is going on. Your sparer will do nothing for this part of the recovery process, something some rheumatologists overlook in their zeal to get people off the Pred. It can be the case that adrenal insufficiency can be the reason for people being slow to get off Pred rather than anything else. However, you are only just coming up to 2 years so your dose is not bad going. If your Rheumy is one of those who thinks 2 years is the time limit for PMR they may be getting the impression you’re being unresponsive.
"rheumatologist insisted that I needed to use a steroid sparer in conjunction with the Prednisone to ensure I got off the prednisone as soon as possible"
Since neither the pred nor the "steroid sparers" have any significant effect on the actual disease process of PMR - they are not going to get you off pred sooner than the underlying autoimmune disorder burning out and going into remission. There are absolutely NO clinical studies that back up his claim except for the biologic tocilizumab - and even it only works to get patients entirely off pred for about half of patients. The inflammation has at least 3 underlying mechanisms, biologics are very specific to one of them and if YOUR PMR involves the others- it has no effect on them and you need pred to manage that inflammation.
Non-biologic DMARDs like MTX and hydroxy are less specific and do work for some people - but only quite small cohorts who DO do very well on them. For the majority the effects is moderate and for many they do nothing at all - except make them feel rubbish.
Prof Mackie has just started a study looking at whether MTX does a good job, there is one about leflunomide in the Netherlands - both the first of their kind so there is still no evidence they work. Even when they do - they only allow a lower dose of pred to achieve the same antiinflammatory effect.
After 2 years on pred, you will be suffering from adrenal insufficiency. From 5mg down you need to taper slowly to allow your natural adrenal function to recover and produce a top-up of cortisol which your body requires for normal functioning. Being on hydroxy won't enable that aspect of the taper to proceed any faster, it takes time and won't be hurried.
What you describe is typical of adrenal insufficiency - but could also be inadequately controlled PMR making it worse. After barely 2 years, your PMR is likely to be alive and well. Just because some doctors think it must be over in 2 years or it isn't PMR doesn't mean that is the case - only a third of patients get of pred within 2 years. That is a lot of us that don't.
Hi fondofforest, my advice is to listen to these women on here. They are lifesavers, more so than most doctors and with their knowledge so generously shared, you will get there. Don’t despair, take things slowly and stay in touch.
During my 2nd year of having PMR, my rheumy (#2 of 5 over the years) had me start taking hydroxy. He was very non-specific about why he added it to the prednisone. I never felt quite right during the short time I did take hydroxy. I used up the 30 day prescription and was one week into the refill when I quit taking it. I felt a little better after stopping the hydroxy and the rheumy was perfectly fine when I told him I'd stopped taking it. That he didn't really care that I'd stopped taking the hydroxy told me more than anything else.
I've been on hydrochloroquine for several years. I also take 10 mg of prednisone a day. I was still in pain until the doctor added sulfasalazine. The only med I have side effects from is the prednisone. Please talk with your doctor so the proper adjustments can be made.
I have been on 4mg for a few weeks now and at last feel the adrenals have joined the party! The best I have felt in a long long time. It takes about 6-8 weeks for my body to adjust to each 1/2mg drop at this level of pred but you just know when it has cos you can do loads. 😀 I will sit here for awhile as next week I am facing a lobectomy. They have just found early stage cancer in my right lung. Never smoked, just life eh. I think it’s going to be quite a challenge. All the best. It does get better 🤗
All the best - my husband had a lung lobectomy in his early 40s, not lung cancer, an unusual presentation of testicular ca! It was an impressive scar in those day! Hope it all goes well and you aren't too sore.
Thanks. It’s done thru a procedure called VATS. The team member I spoke to told me lung surgery is the most painful surgery you can have 😵💫. I then asked what the food was like in the JR she replied “disgusting” 😂😂
When she asked if I was happy to go ahead with the surgery I said “I’m not sure happy is the word I would have chosen” 🥴
Was in his day! It was the upper lobe that he lost and he was on the cardiothroacic unit. At ward round next morning the guy in the next bed who had had bypass surgery was complaining about pain and the surgeon pointed to OH in the next bed and said "He's the one who can complain - I damn near cut him in half!" It really was a massive scar. Yours sound very refined in comparison!!
Another downside for me returning to the UK - the food at our local hospitals is not bad at all. I've had worse in restaurants and had to pay!
I think they have to cut the ribs. At least traditionally. Your procedure sounds like it will be very much less destructive to the body. Best wishes for a speedy recovery.
Speaking of scars: my father had lung cancer (heavy smoker) and under the knife they cut the wrong side of him open (his back, actually, all the ribs) and only then did the surgeon know it was the wrong side. They had to sew him up and cut open the other side so he was under anaesthetic twice as long as he should have been. This is why it's important when something bilateral like a limb or eye, or lung, is being operated on that the patient confirm which is the correct side before being sedated. My stepmother, who had been a nurse in the UK, said it was standard practice, but this op took place in the US. (My father btw didn't seem to mind at all showing off the two massive scars afterwards. 🤷♀️)
Exactly. My mother was horrified. Other bad things happened to him in hospital later, which basically undid any good operation provided. It was very sad really. Negligence on part of hospital each time.
Dreadful - it happens far too much. My husband was with a surgeon who went to see his patient for next morning. "Right, so we are amputating the right foot ..." "No, the left foot" says the patient. "No, the RIGHT foot ..." , quite testily from the surgeon and he got quite "I'M the surgeon ..." So the patient threw back the cover to prove his point: "You took the right foot off a year or two ago ..."
Yes, I looked up VATS and it sounds like a huge amount of progress has been made since early 80s, as of course one would expect. Thank goodness! Best wishes. 🍀
Thank you. I hope my 4mgs will get me through! 😵💫 at least they are not telling me to stop that!!!! Pmr return and withdrawal symptoms would not aid my recovery. 🤪🤷🏼♀️
Just make sure whole team are aware of your Pred - and you should get IV dose during procedure. Maybe discuss with anaesthetist to see if you need a slightly higher dose post op for a few days.
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