Starting trial of prednisone I'm so sick

[Harrisonboy]

The doctor agreed to give me a trial of prednisone.

I am concerned of the amount.

60mg for 3 days

40mg for 3 days

20mg for 3 days

I pray I am doing the right thing. I am so sick right now and this sure seems like a lot. I am very sensitive to medications, so just a little concerned.

I am sorry keep posting but guys I feel like I am dying. Sorry to be so dramatic , but I truly do.

I am having the worst headaches, abdominal pain, back pain, along with the neck, face and shoulder pain.

No matter how much massaging, heat, stretching, etc. Nothing helps. Just not girls sure all of this could be PMR.

Thanks for all the information everyone has sent.

[HeronNS]

I have to say I am rather shocked by this trial. Is your doctor treating GCA? In that case 60 mg would be justified. But a very rapid drop is not usual for GCA. You would need longer than 3 days to make sure inflammation that might be threatening your eyesight is cleared.

If it is for PMR then 60 mg is far too high. Fifteen or at the most 20 to begin. And, again, at least a week before even contemplating changing the dosage.

The thing about diagnosing PMR is that it responds well to a moderate dose of pred. With a high dose of 60 you won't know if a lower dose was going to be effective. The response to lowish dose is one of the diagnostic tools used to confirm PMR.

A high dose is likely to make you feel unwell. I've not had that high a dose, never having GCA as a possible diagnosis but I expect others will be along to give some advice and offer sympathy. The lower doses for PMR usually within a few days have the patient feeling very much better, although there are always a few exceptions.

It would be interesting to know what the doctor expects to learn from this particular trial.

[DorsetLady PMRGCAuk volunteer]

I have replied to your other post….and will repeat - you won’t know until you try the steroids even though it’s a sledgehammer -approach for PMR. However if it is GCA rather than PMR you do need to try them.

[123-go]

I agree with the earlier opinions that you should take the prednisone as prescribed even though the reduction described is ‘unusual’. Your symptoms are horrendous and I do feel that you have no choice at present but to take the medication. Please let us know how things go. My very best wishes.

[SnazzyD]

I think you need to try, if only to give clues. I can quite understand your reticence regards drug sensitivity; I too am ‘one of those’ who seems to be very sensitive to medications and was petrified to start on 60mg. Now, forewarned is forearmed, you will feel a bit odd. How odd, will remain to be seen but don’t panic if you feel like your mind is racing and all systems are go, that’s normal, not an adverse reaction as such. Keep telling yourself it’s not you and it isn’t permanent. Keep posting here if you’re worried, there’s no quota!

If you have large vessel GCA and its elsewhere as well as the head it could explain the whole body firestorm. If this is so, your Pred journey can’t stop after this rapid trial but one step at a time. If you have widespread inflammation you might not get 100% resolution of symptoms immediately but time will tell. Did they ever do a PET scan?

Anyway, you need to do this. Keep us posted.

[Harrisonboy in reply to SnazzyD]

No scan. They won't do one. The Dr. Yesterday told me to go to Mayo.

I pray this works, this morning feels like a freighttrain has hit me. Please JESUS , I need a miracle.

[SnazzyD in reply to Harrisonboy]

Well, there is no shortage of people crossing their fingers for you here. When are you starting your Pred? If Pred is the right thing it should be a game changer. I know it’s horrible when you feel like you’re at the end of the plank with sharks below and pirates behind. I felt the same with Pred after also nearly dying twice from meds in the past, but at some point one’s body is too much in trouble to not see this as a totally different situation and different drug. Let us know how you get on!

[Harrisonboy in reply to SnazzyD]

Your words and prayers mean so much.

I am starting today. I also have a prescription for Ativan or Valium. Do either of those meds help anyone with the side effects?

They gave me these to take for the spasms I have from dystonia?

[Hidden in reply to Harrisonboy]

This is a question for your doctor who knows all your background, best ask his/ her advice.

[HeronNS in reply to Harrisonboy]

Those drugs are used to treat anxiety. They are pretty heavy duty but may be necessary for dystonia. I took diazempam (valium) to relieve anxiety when flying, but was able to get similar benefits from Bach flowers Rescue Remedy. I don't know if that would help dystonia but I was very glad not to use diazepam again as I think it affected me mentally.

[Harrisonboy in reply to HeronNS]

I only take them when I have a dystonia flare. They are really bad for you.

[random901]

Hang on in there, Harrisonboy. I was on 30mg pred for suspected GCA, upped to 40 mg when a biopsy confirmed it 2 weeks later. The immediate effects were miraculous, but I still have some very nasty side effects. The positive stories of improvement on this site keep me going. Better pred than losing eyesight or developing aneurism (latter happened to me pre diagnosis.) Every good wish!

[Harrisonboy in reply to random901]

I just can't handle anymore serious side effects from drugs I have almost died from medication issues before. Just praying for only good from this.

[SnazzyD in reply to Harrisonboy]

What side-effects are you worried about specifically?

Depends on what you mean by serious. It can mean feels horrible but not dangerous or it can mean actually life threatening. Pred can make you feel very buzzed up on high doses with racing mind and jittery with sleep difficulties, especially before your body gets used to it. Some who are not prepared can panic so it feels even worse, so they assume they are somehow having a severe reaction that is unusual.

Are you alone at home?

[Harrisonboy in reply to SnazzyD]

That is mainly what I am concerned about. I have episodes of severe tremors and seizure like episodes already. They don't know what causes it, but medications seem to make it worse.I sometimes end up in the ER when they get really bad.

I have developed a PTSD to meds as well. I almost died from meditation and have been hospitalized from meds before.

I am usually alone almost all the time.

[SnazzyD in reply to Harrisonboy]

Is there anyone you can call upon to either check in remotely through the next few days or come in, for reassurance?

Do you think it is possible you have already had some sort of steroid in the period around your previous head interventions? I mean, this may not be as big a leap into the unknown as you might think. Just a thought.

[Harrisonboy in reply to SnazzyD]

I ha e taken small doses before, but nothing like this.

Just have to pray nothing major happens.

[PMRpro Ambassador]

I think the dose is reasonable enough since you have headaches and if GCA is suspected that is the dose you would require. I don't think your symptoms put you in the realm of "just" PMR. My only concern is whether it is long enough - but you have to try to find out. A lower dose would be pointless. And if it IS GCA, then only high dose pred is going to help you in the first instance - because it is reasonably priced, Your longer term alternative would be Actemra and it is not only a far heftier drug, it is also a lot more expensive without insurance unless you can get onto the Genentech programme.

You can't have it both ways - either you continue as you are, or you try a high dose of pred.

[Seekingasolution in reply to PMRpro]

Are there any guidelines that determine what the dosage should be for starting prednisolone for suspected PMR and or GCA? Having read others reports I understand that a much higher dose eg 40 mgs or 60 mgs is given for GCA but that’s quite a difference. Clearly severity of disease comes into play somehow. I experienced a ‘ miracle response ‘ at a starting dose of only 10 mgs but I read that others start on 15 or 20 mgs or higher.

[PMRpro Ambassador in reply to Seekingasolution]

It should be entirely symptom-based so tends to be based on the doctor's experience - or lack of it. Guidelines for PMR say "the lowest effective dose in the range 12.5 to 25mg per day". For GCS they suggest 40mg for symptoms not including visual symptoms. A patient with visual symptoms, headache or jaw claudication is said to have red flag symptoms and 60mg is more usually suggested. But some need 80 or even 100mg as a starting dose and one well proven approach is a 3 day burst of up to 1000mg per day as an infusion before dropping to 60mg orally and tapering. Subsequently it is found that the total dose taken is actually less because the very high dose is so effective at clearing accumulated inflammation.

[Harrisonboy in reply to PMRpro]

I know. Just can't afford to make a mistake, and make myself worse. Thanks for prayers.

[Hidden]

T o avoid muddying the waters and given the complexity of your situation and the very wide range of symptoms you have experienced might it not have been a good idea to get specialist tests for GCA/ PMR ( PET scan and TA biopsy ) done before a trial of steroids ?

[SnazzyD in reply to Hidden]

Yes, I’m surprised at the lack of a PET given the generalised symptoms in addition to the head. It is not as if it came out of the blue yesterday. But I guess now that they’ve switched on to possible GCA, they can’t delay starting Pred

[PMRpro Ambassador in reply to SnazzyD]

But one problem is - lack of insurance cover. I hate to think what a PET-CT costs in the USA but it is well in the thousands of dollars,

[SnazzyD in reply to PMRpro]

Ah yes…

[Harrisonboy in reply to Hidden]

Probably so, but where I live, you can't get any help. Almost impossible to see a rheumatologist.

My Dr

Said he can't even get patients seen when they have labs showing issues.

That is why this just seems so hopeless.

[Missus835]

I too am sensitive to new meds and my anxiety over that has led me to not taking anything new...almost. I was reluctant, but at the point where I took my first dose right at the pharmacy. Try the Pred. If it works, you will know. You will be practically symptom free. You will no longer feel as if you are dying and the doctor (hopefully) will know where to go from here. If the Pred doesn't work then more tests might be necessary. At least you will have a starting point.

[Maggieart]

When I was diagnosed in 2020, I was put on a similar program - 60 , then 40, then 20. I am a small female (@106 lbs). Eventually I tapered to 4.5 where I have been for about a year now. The bottom line for me is that it worked and therefore I knew the diagnosis was correct. I don't tolerate medicine well either, but I was in so much pain. I had immediate relief. Let us know if you try the suggested program and how it worked. Good luck.

[Harrisonboy in reply to Maggieart]

Second day, and so far nothing.I have 9 days total of treatment.

I feel like I am dying. The headaches are so bad, I was laying in the floor crying. Yes, my body also hurts so bad, but nothing like the heada hes.

[DorsetLady PMRGCAuk volunteer in reply to Harrisonboy]

May take a bit longer for the Pred to get a grip of the headache pain… if it’s GCA.. mine did, but hopefully another couple of days and you’ll notice a difference.

[Harrisonboy]

So far, I am so sick. Nothing necessarily new, but the symptoms seem to be getting worse by the day. I truly don't know what I am going to do if this isn't the answer. Prayers.

[Harrisonboy]

No improvement so far. In fact, I am close to going to the hospital. I can barely stand up for more than a few minutes.

The nonstop headache, severe abdominal pain, back pain, vision issues, are pure Torture.

I pray this starts showing some promise. I am out of hope and strength.

Prayers to everyone.

[Rugger]

🙏 🙏

[Hidden]

I think a visit to the hospital is a good idea. Your situation is way too complicated for anyone here to advise you safely just at the moment.

[Harrisonboy in reply to Hidden]

I am scheduled to go to a pain management doctor on Thursday. If I am not any better, I may asked to go tonthe hospital.

So far, I am not feeling any different on 60mg. Today is the third day.

Thanks for prayers.

[Maggieart in reply to Harrisonboy]

My heart is breaking for you. You will find the answer. I just know it.

[Harrisonboy in reply to Maggieart]

I pray you are right. I never dreamed you could be this I'll and no one knows what ut is. Maybe I'm just crazy..

Thank you for your prayers.

[Harrisonboy in reply to Maggieart]

I also was a painter.

Paintings

[Harrisonboy in reply to Maggieart]

Large horse

Horse

[Harrisonboy in reply to Maggieart]

Bullrider

Bullrider

[Hidden]

It's good that you have a plan, best of luck.