GCA, help... Pred not helping

[twriller]

Just dx GCA biopsy and blood work... Prednisone is Not helping!!! Rheumatologist doesn't know what to do. Telling me it must be something else even though I've had a positive biopsy and blood work. Feel like she has just hung me out to dry and don't know what to do!

[twriller]

Sorry forgot have had PMR for 5 + years

[Hidden]

Hi twriller what dose are you on and for how long have you taken it? I see you have had positive biopsy and can't understand why the dr is being so passive.

[Hidden]

Some people require very high doses to get relief. That what I wanted to know. If you are 40mg pred then there is rooo. To increase to at least 80mg and I have been told of people who require iv pred in much higher doses. If you Dr is stuck then needs to get help. If you feel your sight is being effect the go to accident and emergency for treatment. Please tell us a bit more. 🌻

[twriller]

Sorry, they put me on 60 when the biopsy came back positive. But 60 for 7 days and I didn't feel anything so when I went to her she thought about going up but then she thought no you must not have it and actually took me down and I'm on 40 right now. I said I would only go up if I had eye involvement. And it's not helping the pain in my head and face and neck and my fatigue and just feel like the flu. She wanted the slides of the biopsy sent to the main hospital and I had more blood work yesterday and I'm going to write her an email Monday saying I want her to at least confirm with the other rheumatologist and maybe even the head guy that there has to be something else I should be doing. No eye involvement thank goodness but going to the eye doctor just to make sure.

[twriller]

Sorry again, the doctor said she would only take me up higher on it if I had eye involvement and since I didn't she wouldn't but she was actually reading that from her computer.

[Hidden]

You needed to be at 60mg for longer. You have the benifit of a positive biopsy. So you were only at 6omg for 7 days'. Ias I said that doesn't seem enough time to even start to control the inflammation. Did you have any relief at 60mg? If the answer if no then the dr should have raised not lowered by 20mg. You need to see anotjer Dr ASAP. The dose you are on may save your sight but there are other parts of the vascular system that can be effected. You need to find a dose that after a week or two controls most of the symptoms. You are lucky because you have evidence of gca.... Many get a false negative. Please speak to gp/rheumy you need more support and the pred to do its job. My very best wishes. I "only" but you know how stubborn that can be. Hopefully those more expert with gca will be around soon. Perhaps you could detail you journey from pmr to gca in your profile, it will help others help you. 🌻

[Hidden]

Without the positive biopsy I could understand the Dr's dilemma.... But you have one so definitely that. Insist on full treatment at 60mg for more time.

[twriller]

So I rethought the amount of days it was actually nine days and I didn't get any relief at all and she said I should have had really good relief with in three to four days and also the prednisone makes me feel awful it doesn't give me energy like I hear it can it made me feel drugged and dopey and just not well and sometimes I'm not sure if it's the medicine or the disease! Definitely going to contact her Monday and insist that she at least consult and do something I don't have a follow-up appointment for 4 weeks. She did suggest seeing a neurologist and said I should try to get in within a week and the first appointment I could get was March yep that's right March 2020 and I don't know why I need that anyway if it's proven to be GCA. This started with pain in my temples especially on the right side and my head and just scalp tenderness and I have thought a couple times over the last few years I had it but she always said no because the sed rate was fine but this time my C-reactive protein was high and she's suggested a biopsy which I had and everyone thought it was going to be negative including the surgeon and lo and behold it was positive

[Hidden in reply to twriller]

In that case even though the pred at high dose is a nightmare, the quicker you do 80mg the quicker you can get symptoms under control. Then the drop to 20mg is quite quick compared to reducing for pmr. I have know people on the forum have to go. Upto 80 or a 100. Some that get an iv dose have over 100 from what I have read. I am really angry for you. Positive biopsy are like the holy grail and should in their be easier to treat. You give pred at high dose until symptoms diminish. I suspect the dose just didn't reach the spot so combined with gca to make you wooly headed. If you have to do 4 to 6wks on high dose its nothing in the grand scheme of life. Where ate you by the way... Country wise.?

[PMRpro Ambassador in reply to twriller]

Not if it wasn't enough for YOU. Some people need as much as 80-100mg as an infusion for a result. If she doesn't know that then she needs to find a real expert to consult. I'm just flabbergasted she is arguing with a positive biopsy!

Maybe this provides some help:

pennmedicine.org/for-patien...

[twriller in reply to PMRpro]

My Dr is in this practice! I am going to ask her to please consult with others on her team and even the head guy if possible and tell her I can't just be hung out here for four more weeks feeling this bad taking only 40mg of Prednisone and not knowing what the heck else could be going on. Thanks for all the comments really helping give me the push I need to get on top of this.

[mngirl in reply to twriller]

When I was first diagnosed I had 2 -1000 mg IV. The double vision I was experenceing still took 36 hours to start to change. The biopsy( 4 days later) showed no inflamation on the right side (where I had the most pain) but there was inflammation on the left side ( where there was less pain). I used 60mg for 2 wks 50 2wks 40 5wks( crp & sed rat went up) 35 2wks. All this time I had blood test monthly. I was lucky that my blood work and biopsy showed GCA. I too felt extremely tired. The tiredness didn`t lessen until I got to around 10mg. My surgeon was suprised my biopsy was still positive after the 2 days of 1000.

[twriller]

USA, Pennsylvania and you? UK?

[Blearyeyed]

Being a GCA/ PMR sufferer , I agree with Poops .

Just a few extra questions , you have had PMR for five years, have you been taking Pred for this for that time?

What dose were you on before the biopsy or how long had you been Pred free?

Do you have any other conditions that you haven't told us about and what medications do you take for them?

Was this Rheumatologist a recommended GCA/ PMR specialist ?

Let us know , then we can be more helpful in the advice or maybe help explain what's happening.

[twriller]

First autoimmune disease was Sjogren's syndrome 11 years ago. No medications helped with that even though I tried some. Plaquenil Methotrexate some others so I just lived with it on and off the symptoms were bad then they would get better Etc then five or six years ago the PMR came on was put on the 20 mg of Prednisone at that time and it took it right away the pain. But over these last years have not been able to get all the way off without it coming back. So at this point I was on five my rheumatologist kept me on 5 and said I might have to stay on that forever. I had had pain in my temple a couple times over the last couple years but she always told me it wasn't GCA because my blood numbers. This time the pain came back really bad about 3 weeks ago and that's when all this went on my C-reactive protein was very high and then I went right in and was able to get the biopsy done by a vascular surgeon within two days of starting 40mg I prednisone. Supposedly the pathologist called my rheumatologist at 5:30 in the evening as soon as he had the results to tell her it was positive. Only other issues are high blood pressure which I take medication for and stomach acid which I take medication for and my lovely reliable Ambien without which I would not have gotten a minute of sleep in the last 11 years.

[Hidden in reply to twriller]

I presume they have you on aspirin? When you started pred your does was higher as usual starting dose of 15mg. You could be someone who needs more so 80mg may have been more appropriate.

[HeronNS in reply to twriller]

I hate to bring this up but a side effect of Ambien can be headache. Not that it discounts your positive biopsy result, far from it, but it may be contributing to the lack of rapid response to high dose pred. Who knows? I don't know what effects the other meds you are on may be having.

And definitely with GCA you should have been on the high dose for at least a month before any consideration given to a reduction. As the others have said, occasionally one needs even more than 60 at first, unfortunately.

[twriller]

Oh sorry again I am bad at this. Yes when they put me on the prednisone they also put me on a low dose aspirin every day and my blood pressure went up on the prednisone so my cardiologist had to raise my blood pressure medicine too

[Devoid in reply to twriller]

Just to add to what others have said,you do need to rest after having the biopsy your body needs to recover, whilst it’s not a big procedure it’s still not a normal every day thing for your body. I experienced strange pain in the temple,like the blood was still trying to flow the same way.

[Blearyeyed]

No your not bad at this you are just worried , but this info is helpful.

The only thing we don't know how is if your Rheumatologist is a Specialist in GCA/ PMR , which they don't appear to be from their reaction to the Pred you were put on.

So , first , you have a positive biopsy , you have GCA .

2. You may not have reacted with the rapid improvement for three reasons

1. The dose was not high enough for a person whom has other Autoimmune conditions that also affect your recovery rate .

2. You have already been on Pred for years so that rapid change in your symptoms often won't happen , even with such a big increase in dose.

You have become desensitized to Steroids over the years .

Just as a PMR sufferer can get an instant feeling of energy and recovery on the first high dose but possibly need a dose higher , and for longer , than they had at the beginning of PMR to get the same results after a few years of Steroid Treatment , the same could be happening to you going on the high dose for GCA.

Nine days is not that long anyway , but in your situation after five years of Steroids and with other Health Issues , the lack of instant response should not have been such a shock to your Rheumatologist.

3. Your other Autoimmune Condition affects the same parts of the body and the GCA will be triggering a Flare in that , and other Health issues you have too.

If you aren't on any specific medication for the symptoms and nerve pain of your Sjorgrens a part of the pain and Fatigue you are suffering could be coming from this.

A vicious circle could be occurring with the Sjorgrens symptoms making it harder for you to respond quickly to the Pred Treatment .

What Now?

Well , you need to get to see that Rheumatologist next week , preferably on Monday , possibly with another colleague at the Consultation , or after they have discussed things with a GCA/ PMR and Sjorgrens Specialist .

Im not a Doctor , or an expert , but I can read the same guidelines on GCA treatment in a book that they can and understand them. You should not have had your dose decreased in my opinion until you had a positive response based on reading Hospital Treatment Recommendations for GCA .

You are GCA positive , as Poops said , remaining on that dose for longer , or getting an increase in dose is more usual in these cases , even without eye involvement.

In fact , as Poops said too , in new , or recurrent and severe cases of GCA , without an instant reaction to the initial doses , Specialists will put patients on higher doses on an IV in Hospital to get the symptoms under control.

Why? Not because you need to panic but because it's a more efficient treatment.

It can take any other issues that are causing a barrier to your response , like bad or slow absorption of the Steroids out if the equation, by putting the medication straight into the bloodstream and avoiding the need for digestion.

If they don't suggest this , you should probably discuss this with them.

The Hospital enviroment and supervision of treatment also allows them to see if any of your other health issues are getting in the way of your GCA recovery and amend all of your current treatments to help improve your recovery.

It can also prove if Pred at high doses in your case is not appropriate and ensures that they can try you on other alternatives or combo treatments with Pred finding the thing that works and then sending you home with the right doses or arranging injectable treatments at the Hospital or your surgery.

After many patients get this sort of Hospital assistance they are often put on doses of Pred of 60 -80mg for a few weeks or a month too before starting the taper of medication.

If you haven't seen an Opthamologist or had any eye or retinal scans yet it would be sensible to have these done too , even if you do not feel you have any eye symptoms , not all GCA eye involvement is noticeable but eye symptoms can come on suddenly.

So , my thoughts are , try and take a deep breath and prepare to talk with the Doctors properly about it on Monday.

You want an appointment then , or as soon there after , and if you can't see them on Monday you need to request that you may return to the dose of 60 mg in the meantime until they have sorted your Treatment out more thoroughly.

You clearly have no problems taking Pred , it's not like dealing with a new case , so unless they think that being on the higher dose can affect your other Health Issues they should not have a problem with this if you haven't reacted badly to taking the Steroids themselves.

If , you aren't happy to wait until Monday or your symptoms are unbearable and getting worse , contact them and see if you can sort it out today ( Sat) and see any Rheumatologist available to sort things out now .

The dose you are on at the moment after a week at the higher dose is not improving all of your symptoms and it needs sorting out , but it should be helping to reduce the inflammation and stop the symptoms getting worse .

This is probably what your Rheumatologist meant by no eye involvement but they still need to sort things out ASAP.

If they aren't experienced GCA Specialists you might be better getting a new Consultant.

Hope that helps .

Others like Dorset Lady , who is the real expert , I'm sure will answer you to soon.

Take care and let us know how you get on xxx

[scats]

Listen to what Blearyeyed says, she has been fighting multiple autoimmunes for years, she knows what she is talking about, even if she isn't a doctor.

Good luck to you, and take care.

[gifford7]

When I was diagnosed with GCA I was put on 80mg/d pred but after 2 weeks my high CRP only came down 10%. On the 20th day I had a stroke caused by the GCA. In the teaching hospital I was put on a pulse dose of methylprednisolone by infusion: 1,000mg/d x 3 days, which finally brought the CRP to the normal range. At the initial diagnosis I did suffer partial vision loss in one eye.

uptodate.com/contents/treat...

"Threatened or established visual loss at diagnosis – If there is a strong suspicion of GCA as the cause of visual symptoms or signs, we suggest the use of intravenous "pulses" of methylprednisolone, customarily administered as 500 to 1000 mg intravenously each day for three days, followed by oral therapy with prednisone 1 mg/kg/day (maximum of 60 mg/day), as recommended above for uncomplicated GCA. Patients with presumed or proven GCA and incident diplopia should also be treated with an initial intravenous pulse of high-dose glucocorticoids.

Though not validated in rigorous studies, this approach is used because of the crucial importance of preventing visual impairment due to GCA, which, once established, is rarely reversible [16]. The stark reality of such visual loss is that patients seldom recover useful vision in an affected eye."

[DorsetLady PMRGCAuk volunteer]

Hi,

From a personal viewpoint I would say, maybe not enough Pred, but definitely not on it long enough.

I know you were already on Pred for PMR, which sometimes can muddy the waters, but with a positive diagnosis GCA it really needs to be addressed as a “new” illness.

60mg is usually the high end start dose for GCA with no sight issues, and with you already being on Pred your Consultant obviously thought that dose would be enough - wrong obviously in your case! Plus you need to be on it longer - 4 weeks minimum really. Certainly not 9 days - and if you didn’t get relief that tells me it wasn’t high enough.

Me - did have sight problems so on 80mg for2 weeks, until sight issues resolved, then on 60mg for 8 weeks. Thinking back it probably did take 3-4 weeks for things to settle completely.

[Pippah45]

My brother with GCA was on 100 pred for a while now off it altogether. I also have it and didn't stay long enough on 60 pred. Down to 30 now. So I agree with the others

[Iwillwin123]

Higher oral dose

Prednisone Infusion

This advice is all from extremely informed and experienced folks here . Please do follow through as advised by them strongly with that strange doctor.

But want to add my two bit - why not injection Actemra ? This can be twinned with the pred dose too . It is steroid-sparing and focuses on reducing the inflammation ......

In any case you should absolutely refuse to accept this wait and watch .

Regards

[twriller in reply to Iwillwin123]

I have read about that medication but did not bring it up to my doctor because I don't think I'm a candidate for it. It said you cannot take it if you have diverticulitis or I'm sorry diverticulosis and on several of my colonoscopies it's very prevalent that I have many pockets of it in my intestines so I can't take it. Apparently it can cause them to perforate.

[Iwillwin123 in reply to twriller]

Oh ....... yes then I suppose Actemra is a no. But yet please do chase this status until you feel satisfied and in control . There is no point in being a guinea pig for the possibly ill informed doctor !

[Devoid in reply to twriller]

There are lots of alternatives to help reduce steroids if you aren’t a candidate for actemera.

[PMRpro Ambassador in reply to Devoid]

Not that work reliably I fear.