Could this be only prednisone withdrawal?

[kathybirch]

Prednisone withdrawal or return of symptoms?? I’ve been on prednisone since Dec 10: 60/50/40/30/20/15/10/5 and off 4/6 when my rheumy doesn’t think it’s GCA due to negative test results. I’m experiencing a terrible headache, blurry vision, fatigue, loss of appetite, awful depression, anger and anxiety...it’s covid so I’m afraid to go out, much less to ER. All medical offices are only doing phone or video visits. I’m worried that this may not be just withdrawal. Thanks.

[SheffieldJane]

This December? Heavens above. Where to begin? If that is the case, it has been far too rapid and yes you are in danger of a relapse. I want GCA experienced members to come forward to advise you, like DorsetLady. Negative test results are very usual when we take even low dose Prednisalone. I would imagine that a return to the dose you last felt that your symptoms were under control at would be wise and to rest there until everything settles. I hope others come along. I feel that you are being mismanaged. Tapering is a subtle intuitive business.

[kathybirch in reply to SheffieldJane]

My sed rate and crp were always low, even before prednisone, ultrasound and biopsy normal in December but put on med anyway. Caused bad side effects even at 20 mg. ER twice for those. That’s why I guess he took me off and doesn’t think it’s GCA.

[SheffieldJane]

You see, symptoms rule Kathy. The severe headaches are a worry. Does it hurt when you chew? Does your tongue ache? The blurry vision, the loss of appetite. I guess you are getting thinner. Your blood tests won’t help your doctor. This is quite a rare disease that endangers your eyesight and you already have classic blurry vision! I would go to the emergency room of a hospital even in these times. Your situation is potentially as serious as an impending stroke or heart attack. I would present myself there. Nothing to lose, everything to gain.

The depression, anger and anxiety could be connected with Pred. withdrawal, resurgence of the disease, lack of faith in your doctors and the sheer debilitating effects of the disease, wishing you wise doctors! X

[FnF36]

I am not as experienced as others but my history of GCA and Prednisalone is as follows.

I experienced all the symptoms you describe and on occasions continue to do so, mainly because I am probably doing too much. Another recent thread about grass cutting and relapse put me straight!

19 November 2019 GCA diagnosed and 40mg prescribed. 7/8 December visual disturbances, 10 December pred increased to 60mg. 14 Jan 50mg. 28 Jan 40mg. 11 Feb 30mg. 17 March 25mg. I remain on 25mg despite rheumy wanting me to reduce. At this level I feel comfortable and intend to continue until I have a prolonged period without indications of flares/relapse.

I hope that helps a little.

Wishing you well and keep safe.

[SnazzyD]

So you’re, off Pred? Usually withdrawal comes on from day 1-5 after reduction and lasts a week or so, often featuring headache, fatigue and body aches. It is difficult to tease out the emotional effects of the current viral situation too, plus you’ve had an ordeal, have been cast adrift and are frightened. However, you do need to call someone because with GCA people can get normal markers and biopsy, I certainly did but my treatment continued because of my good response to Pred when nothing else helped. *Symptoms are supposed to trump results*. Are you getting any other head symptoms and what kind of headache is it? Is it just blurred vision or do you have any other distortions or disturbances? A trip to A&E May be in order if nobody listens today.

[kathybirch in reply to SnazzyD]

Some bumps on head, some quick little spots of pain that disappear quickly, biopsy site tender

[DorsetLady PMRGCAuk volunteer]

Hi,

I’m afraid a negative result doesn't always mean you don’t have GCA, whether that be blood tests or a biopsy.

My guess would be a combination of GCA symptoms and adrenal issues from what you describe...so you do need to seek medical advice ASAP.

I appreciate you are worried about the virus, but if you cannot get advice over the phone then you need to go to ER.

Here in the UK doctors are getting concerned that people with major health issues are not going to A&E (same as your ER) because of the virus so are putting themselves at more harm. I would hope your hospitals are doing the same as ours and segregating Covid and non-Covid patients in emergency Dept.

Please speak to someone today, and then let us know what’s decided.

[Hidden]

December 2019???? Wow! That is wicked fast... I never had any really abnormal test results (i.e. ESR & CRP) they were always on the hight side but within range. I started on 80mg and it took months (6+) to get down to 50mg! It's been 2 years and 5 months and I am down to 8.5 mg. Withdrawal is horrible, (and would give you all those symptoms) but I personally believe your taper has been way to aggressive... I'd try to get a second opinion.

Just wondering... were the symptoms pretty much gone, when you were on 60/50/40? Wen did they come back with a vengeance?

[kathybirch in reply to Hidden]

Symptoms gone on high doses but ER 2x, for pulmonary embolism and brain aneurysm, tachycardia, high everything and bad side effects. Again at 15 mg for bad headache. Headache ever since.

[PMRpro Ambassador]

The primary question is: did the symptoms go at the highers doses? And at what dose did any return?

I don't particularly care if your rheumy thinks it isn't GCA due to negative test results - those clinical symptoms are very suggestive of GCA. Some 1 in 5 patients even with GCA have normal range blood markers (ESR and CRP) and in fact someone can have an ESR of under 20 that is 5 -10 times their personal normal. The biopsy is only accurate when it is postive - then it is 100% correct - but being "negative" may only mean they didn't find the giant cells they were looking for, not that they are not there, but they might be in another slide or even artery. GCA doesn't always affect the temporal artery - but it happens to be very convenient to have a look at and often IS affected.

Even if you have to start with a video call, that is a start. They won't find much with a physical examination anyway if you have had a TAB.

[kathybirch]

Thanks very much. I will video my pcp in the morning to get her suggestions.