TIMING OF 55 MG OF PRED...OR SOMETHING ELSE?

[Missus835]

I'm currently on 55 mg. of Pred for what was suspected GCA, but Ophtamology and Rheumy say negative, and having a really difficult time with it. Shakiness, extreme fatigue, exhaustion and weakness. Coordination is off in hands with the shaking, to wear I thought I might actually have Parkinsons or worse. Brain fog. Waiting for results of bloodwork, which this time was fasting and testing for Glucose. I've been into the ER for the weakness and shakiness almost 2 weeks ago for 12 hours, as it was becoming very scary. They did many tests: bloods for everything, chest x-ray, EKG. White count was up. CRP 3. Diagnosed with UTI, put on course of antibiotics for a week, which availed no change.

My thought was "is it the timing of the Pred"? This after another day of the "symptoms". I take it around 7:00 AMish with food. These symptoms are really debilitating with a short trip to the store wiping me out to wear I crash on the couch for a couple or so hours when I get home. Literally soaked with sweat, head to toe. I've had to take sick leave from work - again, because the fatigue just won't let me function. I do one thing at a time around the apartment, sometimes sitting while doing it and the weakness makes me sit or lie down. Palpitations the other afternoon. Took 500 mg tablet of Magnesium with some peppermint tea, which alleviated the palps (thank you PMRPro for the post on Magnesium the other day). I've now added 250 mg. Magnesium to my daily intake of supplements.

I take my dose at 7AM with food and then around 10:30ish, I'm famished again. This goes on all day. I eat a regular supper around 5PM and then everything starts to level off, but the hunger doesn't. I could still eat after a good-sized meal.

I'm wondering about splitting the dose, but unsure how to do so. At this point, Rheumy wants me down to 50 mg. but I'm opting for the slow taper, so at 55 mg. Started 60 mg. Jan 21/23. Started 55 mg. about a week ago.

Does anyone have experience with splitting the 55 mg. Prednisone; is it even possible?

[PMRpro Ambassador]

Splitting the dose is generally not advised with GCA - although if the GCA symptoms are returning before the next daily dose is due it may suggest the antiinflammatory effect is not lasting the full 24 hours and that may be a problem.

However - if the doctors say it isn't GCA, why are you still on such a high dose? There is no reason to remain at 55mg and you could reduce considerably quite quickly. The slow taper is for patients with GCA where you need the symptoms to be managed well and you are looking for the right dose. If it isn't GCA you need to get to a much lower dose fairly quickly.

If it IS GCA, then you MUST remember it is a serious systemic illness and, combined with the high dose of pred, you are likely to feel unwell and should be acting as a poorly person. Both the illness and the high dose of pred make it unlikely you are functioning well in your job, high dose pred affects judgement as well as physical performance.

[Missus835 in reply to PMRpro]

I do find that a couple of symptoms return before 24 hours, in particular shoulder blades (thoracic area), neck up into back of head. It's the Rheumy that wants the faster taper due to the "no GCA" diagnosis. If it is no GCA, then I would have to agree and would love to get back down to 14 mg. where I was a month or so ago. Do you think something like Methotrexate or alternative would help with the reduction? I am most definitely feeling "poorly"; downright sick and these symptoms, although I was always somewhat shaky with PMR, have escalated over the last month with the increase of the Pred. It is good to know that all of this is falling into the "normal" category for Prednisone consumption.

Thanks for your response Pro, I will continue with the taper, whilst monitoring the symptoms. May try 50 mg. this morning, although 55 mg. is containing most. I am unable to get hold of the Rheumy, no GP and so I am relying so much on this forum for advice. Went the long route on Friday and e-mailed my former Neurologist, who has helped me reach out to the Rheumy in the past. Wishing I was still under his care.

[PMRpro Ambassador in reply to Missus835]

No. I don't really think MTX would achieve a lot - but you probably will have to put up with feeling rubbish until you get the dose down.

[Missus835 in reply to PMRpro]

Understood and thank you. Rubbish it is for a bit longer. It is a relief to know actually.

[piglette in reply to Missus835]

The trouble is steroids are a wonder drug, but they have an awful lot of possible side effects!

[SnazzyD]

Hello, I’ve not yet had time to pick through your posts to work out the timings of everything. I’m wondering what you were told about how Pred can make you feel at high doses? From my experience of GCA doses it is similar and quite normal even if it makes one feel totally out of control. The shaking (not Parkinson’s), sweating, racing heart beat, weakness, panic, wired but exhausted with insatiable hunger is a common response. When I was on these doses I moved in slow motion and one thing a day was the new normal. My coordination went, my eyes went fuzzy and I couldn’t concentrate. I took myself off the road until the dose got low enough to be safe. No, you shouldn’t be going out to work like you ought to be normal; this is a powerful drug plus you may have an autoimmune condition.

GCA aside, I walked into A&E back in 2017 fit, strong and active and two days later I was a mess. Nobody prepares you for it and it seems you’ve been on a hefty dose for over a month so I’m not surprised you’re feeling like this. The main thing is trying to take a breath and stop freaking out that you feel so bad as one can get into a whirlpool of anxiety. Your white cell count will be up because Pred normally causes a rise in Neutrophils, this is normal.

The hunger and feeling of being perpetually low in blood sugar is driven by the Pred forcing your liver to create glucose from its stores of glucagon. This causes a rush of insulin to clear it because the body doesn’t like a high sugar. This leaves you feeling shakey and hungry, boom followed by bust. Depending on when your blood is taken in this cycle you might be quite high or low or normal. If your sugar is being forced up by the Pred before you eat anything, then whatever you eat will add to it. This is why eating a low low carb diet is essential so you are not adding extra sugar which makes the body produce extra insulin. Eating a very low carb diet doesn’t completely get rid of the hunger but it really helps the scary low blood sugars. I ate masses as long as it was veg or protein and my weight was fine but more importantly so was my blood sugar.

So, at first look, this is all par for the course. It feels horrible but it is not unusual and will get better as the dose reduces.

[Missus835 in reply to SnazzyD]

Thank you so much for this info SnazzyD. I also have Generalized Anxiety and so all this is ramping it up. In general, I am low carb and will definitely aim for lower. I also had a feeling that it was low blood sugar and so will reduce the carbs even more. This is no easy feat for a sweetaholic. I don't eat bread, potatoes, rice. Have cut those out completely. Love veggies, but moreso cooked ones, so made a veggie stew and have frozen it in portions. Will try for more protein. What about a Keto diet maybe? I don't drink pop, only water and soda water, clear tea and morning coffee.

I'm also attempting to reduce the Prednisone this morning. I agree it's an extremely high dose, since it is said that I don't have GCA and will monitor for symptoms.

I do work from home, so going out in public has not been a problem. It's the fatigue and fogginess and getting irritated with the customers that is the problem and I would have to tell my supervisor, "I just have to go and lay down for awhile." She understood, but I could no longer work like this, so will be off for at least 3 months.

I'm not on the road and haven't been for quite awhile. This was mainly due to not being able to turn my neck with the PMR. PMR has made me well aware of the Pred, but certainly not at such high doses. Last going off was at 14 mg. and then boom.

Thanks to you and Pro for your quick responses and rest assured, every point you both made has been taken to heart and will be acted upon.

[DorsetLady PMRGCAuk volunteer]

Agree with all that PMRpro has said...and obviously if the Pred is causing your issues [which is highly likely] then you can reduce more quickly. .. and doing it slowly as you are is just going to prolong the agony. What tapering regime did the rheumy suggest?

However, if you DO have GCA then you need to be a bit more circumspect.. what if any symptoms of that possibility do you have?

Do you have another appointment with Rheumy to discuss recent blood tests? This whole situation need further input from your medical team.

[Missus835 in reply to DorsetLady]

Thanks DL. After getting the "no GCA" diagnosis after the TA biopsy on Feb. 1/23, the Rheumy immediately dropped me to 50 mg. Pred. with a 5 mg. taper every two weeks going forward. I found that some of the symptoms returned after a few days, i.e. neck pain, thoracic pain, shoulder. At that point, upped the Pred to 55 mg. which seems to be almost containing those symptoms, with exception of thoracic pain. I'm thinking a little pain is worth the faster taper, just to help with the exhaustion, shakiness and weakness.

The pain I have, whether GCA-related or not, is an almost referred pain at the top of my forehead (right side along the hairline) and this occurs when I run my finger lightly along my eyebrow? The surgeon who did the biopsy says this is possible with GCA. I have not lost vision, but my vision has become different, in that if at the computer, I now must move about a foot in toward the monitor, otherewise the eyes get irritated. I have eyedrops to instill when needed (prescription). Whereas before, I could sit well back and keep my arm straight.

I totally agree that my medical team needs to be more involved. Just getting them "involved" is an exercise in self advocacy, because here in Nova Scotia, it's near impossible. The Rheumy does not take messages, return calls, follow up with bloodwork. One cannot call her directly. Their nursing station cannot get a message to them, but simply refer you to an ER or Walk-in Clinic. A complete exercise in frustation, which does not help with the anxiety factor. Hopefully my e-mail to my former Neurologist will bare some results as he has been able to reach out to the Rheumy in the past. Fingers crossed for tomorrow (Monday) as she is in the clinic only 2 days a week.

Thanks so much. I truly appreciate your help. I'm not a whiner or complainer, just need answers. These last three responses from Pro, Snazzy and yourself have certainly helped me see more clearly.

[PMRpro Ambassador in reply to Missus835]

Ah, hum. A negative biopsy does NOT mean it definitely isn't GCA and if that is what your rheumy thinks you are batting on a sticky wicket. I think you may have to go to the appalling option of a walk-in clinic and hope someone there knows about GCA. As for a specialist you can't contact - that's about as much use as a chocolate teapot ...

[Missus835 in reply to PMRpro]

Exactly. I wanted to send her the paper you posted last week. I think no one knows about GCA....or PMR for that matter. At least not here. That quackadoo GP, who is no longer my GP, tried to tell me that PMR and GCA are the same. To which I replied...oh no they are not and when my vision is at risk I question everything. He didn't like that at all. Had the same conversation with the Ophthalmologist this past week. Well they're basically the same he said. His team...the intern and hotshot resident. I gave up arguing and said well shrug. They read the report and said no sign of weakness or healing in the 3 cm. of artery that was taken. If artery, optic nerve and vision looked good so probably not GCA. Mind you the Ophthalmologist pretty much went by what the snotty resident said. Thanks Pro Just took the 50 mg. Pred. Fingers crossed in Dartmouth. NS.

[HeronNS in reply to Missus835]

Private messaging you.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

As PMR has said a negative biopsy is not a guarantee you don’t have GCA - unfortunately too many doctors seem to think it is. As for Rheumy’s approach to patients re feedback one wonders why she’s in the job at all….as said you may need to resort to walk-in clinic or ER…

and once you get things sorted report Rheumy for ‘not fit for purpose’!

[Missus835 in reply to DorsetLady]

Facts. I've only been able to see her twice since May '22. One of those visits was just this Feb. 8 after the biopsy. She is condescending and quite rude. This time she did spend some time discussing my anxiety meds and whether I should talk to a shrink. To which I replied maybe back when I was 14 when my first panic attack happened. So she referred me to a shrink from whom I have not heard, and prescribed the anxiety medication I've been on for 20 plus years. I believe she spent more time because my daughter was present for this appointment. I'm going to try to find another Rheumatologist here in Halifax or approach the Neurologist who looked after me when the PMR began. I felt very safe and cared for with him. Thanks DL.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Having a physician you have faith in is paramount…hope you can get another without too much problem…

[agingfeminist in reply to Missus835]

just a thought...I had the sharp pain when running a finger along my left eyebrow...it turned out to be trigeminal neuralgia...which I had four years before in my jaw...it is horrendous pain when it strikes and no pain medication (including morphine eases it). The nerve has 3 branches...jaw, eyebrow and forehead. The ophthalmologist didn't recognize it...but your neurologist might be the person to speak to.

I am so sad to read about your suffering...there are times when this disease and the medication really seem to get the better of us...but it will pass..."Normal" feels a long way off for me but "something I can cope with" does arrive. Hang on in there...something better does lie ahead.

[Missus835 in reply to agingfeminist]

Thank you for the "I can cope", which I can; although there a days when I feel like just one more thing added on to everything else and I will scream. I think the "normal" ship may have sailed. It will be the "new normal". LOL.

I'm going to the dentist today so, will ask him about the trigeminal neuralgia, (if it's the pain I'm thinking of, it is horrendous) as I've had TMJ (very mild) for years, but it could be triggered with the PMR and wouldn't that be just the perfect answer?

I appreciate everyones' responses so much.

[123-go]

I agree with others’ comments and questions on why you are still on a high dose if you haven’t got GCA. I had suspected GCA 4 years ago and was prescribed 60mg Prednisolone as a precaution. Several days later I had an ultrasound scan of my temporal arteries and a thorough ophthalmology examination which both showed negative for GCA. The 60mg was reduced quite quickly (in around two weeks) to 15mg pred for several weeks, then 10mg and then 7.5 mg after which I continued with a slow taper.

I have to say that during the few days I was taking the 60mg Pred I was wired and taking on all manner of jobs indoors with high energy levels ( I described myself as a frog in a box 😏) followed by exhaustion when I would stop everything mid way and sleep. These effects reduced as the pred was reduced.

I strongly feel, as DorsetLady has suggested, that you do absolutely need more input from rheumatology. I don’t know what the system is in Canada but can you ring the secretary for the the rheumatology department and ask for an urgent appointment explaining your symptoms? It is, in my opinion, negligent to leave you to manage this on your own and if you do have GCA you must have the proper care and attention.

Please do be your own advocate. It may well be the only way to get results and the care you need and deserve. All good wishes to you.

[Missus835 in reply to 123-go]

I totally agree and so glad your diagnosis was negative. There is no secretary for the clinic. One is not even shuffled over. No way to get through the red tape without backflips or cartwheels. Except to say if it is urgent go to ER or a walkin clinic. Which I have done on several occasions to the tune of a 12 hour wait.I've now gone through my former neurologist to reach out to the Rheumatologist. Reducing even more quickly is my goal and another tweak in my diet. Lowering the carbs even more. I appreciate your reply. Thanks and ever so helpful.

[Bluey-1]

All I can add is that when I was on 60 mg pred daily I had all the symptoms you describe plus delirious at times and suffered severe insomnia. Things improved a little once I’d tapered to 40 mg. I did a quickish taper to 40 mg but thank god I did. My body does not react well to high doses but it saved my sight so needs must at that point. It will get better. I have no advice on pred taking times. I took it in the morning.

[Missus835 in reply to Bluey-1]

Thank you for this. I've decided to try a quicker taper effective this morning and also a tweak to my diet i.e. lower the carbs more. I will continue taking the Pred in the morning. Cheers and glad you're getting on well.

[KASHMIRI1]

Sorry to hear about your experience with the high dose of pred l sympathize with you. I started on 60 mg pred and took that dose for over five weeks, l was missed by the system as it was May 2020 and we were in our first lockdown. My GP sorted that eventually and l spoke a rheumatologist who gave me a steady schedule for reducing. Which at times has been to quick for me. I had all the side effects you mention and by 2 o'clock all l could do was go and lay down and sleep. It got scary at times but does get better the lower you go. Hope things improve for you.

[Missus835]

Thank you for your reponse. Although no one wants to see anyone go through any of this, it is comforting to know we're not going through it alone. The Pred is down to 50 mg. starting yesterday and will be down again to at the end of two weeks, maybe sooner. Testing, testing, testing at the moment and attempting to alleviate some of the glucose issues it has been causing. I did last longer yesterday before the need to lie down kicked in for almost 2 hours, but it was a great nap. All the best to you and your journey. ❤️

[RachelJDH]

I do not have enough knowledge to comment on your dose but following good info on this site I have started to take my pred at about 4.30am. Sounds weird having to have a snack by the bed but it has helped hugely and I no longer have that horrible exhausted period in the morning - I guess I sleep through that now. Also I find a scrambled egg or two if hungry with no toast really stops that sugar low. Not everyone can cope with eggs but the protein does make a difference for me. So sorry you are having such an awful time.x

[Missus835]

Hi. I was thinking about taking the dose earlier as I'm always up very early (5:00 to 5:30ish, but there are those rare days when I make it to 6:30 LOL. I tried a hard boiled egg yesterday morning when the hungries it and it actually did help. Going to get a few more protein "snacks" today if weather permits. Have an appointment regardless, so if the energy level holds, I'll get to the store as well. Every bit of information helps. x