Vasculitis UK

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Two years ago this month, after 2 viral episodes, I developed new and different upper body pain which became intolerable. Saw a rheumatologist who initially diagnosed PMR. After blood results were in, the diagnosis was C-ANCA + at 1.6. Started on 16 mg. of PREDNISONE and within 2 days, felt great-no pain, plenty of energy.

About 6 months later, sought a second opinion from an expert in vasculitis at Johns Hopkins in Baltimore, MD. She did not agree with the C-ANCA diagnosis, as the titre was too low to be positive in their lab's parameters.

Some of you may remember that I had a tropical mosquito borne virus while in the Caribbean. The literature shows that this virus can make itself known again in 2 years after initial recovery with joint pain and Neuro problems, including temporary loss of vision in one eye . I had tapered to 8 mg. when the temporary vision loss occurred and took it upon myself to go back up to 16mg.

Eyes examined which showed on Doppler that central retinal vein was presumed to be blocked because it could not be visualized by doctors. The vasculitis expert was "intrigued" with a possible connection between the tropical virus and my symptoms , but no way to prove it. Also puzzled by PMR diagnosis because sed rate and CRP absolutely normal. She suggested a slow taper off Prednisone.

I changed rheumatologist who also did not believe the GPA diagnosis. And repeated all tests , ; he sent blood smears to 3 different labs, all negative. But that could be due to the Prednisone treatment and a brief time on Methotrexate.???

My current situation is that I have tapered from 16 to 4 mg of PREDNISONE. I have stayed at 4 mg for quite a long time. I am now very nervous and depressed. I think it is the reduction in Prednisone. I am fatigued, listless, and achy all over again; I feel a loss in confidence as well.

Has anyone felt this way on low dose Prednisone? I am tempted to go back up as an experiment to see if that makes the difference. What would you do? I am scheduled to see rheumatologist in 2 weeks. Thanks for any ideas.

It has been a rough 2 years and still do not feel normal; although I had a burst of feeling well and normal sometime back, which I wrote about on this site, but now shaky, depressed and no longer know what to do, I read all day and have no motivation to do anything else.

My husband cheerfully does everything; but I am feeling lost and useless.

15 Replies

Hi! Hang in there!

Dang it!

Doesnt it make you crazy how the docs are 'intrigued' by our symptoms. I'd rather have something boring disease and be special in a different way!

I've been sick about 2 years and was nearly off prednisone. Now flared and back to 30. My face looks like a balloon blown up.

I also have a cheerful husband who takes care of everything. Aren't we lucky? I'm trying to figure out if I can work 5 days a week with all the symptoms and pain. Anyway, not about me. Just realize you are not alone.

These diseases are a long distance marathon. Pace yourself.

Also, I have a son in the first few practices of American football. He keeps quoting his coach to me. (Of course, I've said these a million times).

What he brought home tonight was that when something gets hard, give yourself permission to start over. RESET.

Also makes me feel better if I can do something nice for someone unexpecting. For me, that generally means a handwritten note to some relative or neighbor. In cursive. About things to be thankful for.

Really, hang in there!

I'll be thinking good thoughts at you!


Dear Jessileigh, Thank you for your kind response; it's always a good thing to vent and know someone listened. All the best to you...

"Also puzzled by PMR diagnosis because sed rate and CRP absolutely normal"

They are in up to 20% of patients with PMR/GCA. Plenty in the medical literature about it. And for some patients the ESR/CRP don't rise when they are on pred, even at a low dose.

When you are on longterm pred at doses above 7 or 8mg your adrenal glands are not required to produce cortisol and they atrophy (get smaller). It is not really until you are down to about 5mg that they have to wake up and produce cortisol for you to function - most people feel OK or only slightly fatigued at that point but everyone meets it at a different point.

However - since PMR DOES remain an option, (whatever the rheumatologist thinks) it may also be that at 4mg the dose is simply too low to manage the PMR inflammation so it is building back up and causing symptoms. I'm sure you would get plenty of replies over on the PMRGCAuk forum.

IF it isn't PMR then a slight increase in pred dose won't encourage your body to produce its own steroid, only patience and luck do that. Luck because for some people the adrenal function doesn't return, it is fairly rare though although probably not a rare as some rheumies seem to think.

If it is PMR then you will need more pred to manage the inflammation that is causing the symptoms. Only you know whether you can live happily without a higher dose of pred.It doesn't sound as if you are particularly happy at present.


Thanks for your response. I know everything you say is true. I guess it is more of an emotional state I am feeling. I did decide to go up to 8mg. I know doctors are in a hurry to get patients off steroids, but I don't know why the urgency when it is helping the patient notwithstanding the side effects which I am familiar with.

Having a problem understanding the reasoning of physicians; their "by the book approach " does not make sense to me. I feel in my case, the benefit of a little more PREDNISONE outweighs risk. It is, after all , a quality of life issue. Doctors lose sight of this.

Thanks again.

With you all the way!

I myself am currently weaning off prednisone. I started in January on 60 mg to combat severe autoimmune allergies. I have some of the same symptoms as you; achy tired and unmotivated,which is definitely not my normal personality. I have always said I have a love/hate relationship with prednisone as I have been on it periodically over the past 12 years to treat my RA and Lupus. Three months ago I was diagnosed with yet another autoimmune disease: HUVS. I have to say that of all the three, HUVS is the worst. I literally almost died from systemic swelling all over my body. The swelling of the small blood vessels put me into cardiac arrest and blood work showed elevated levels for stroke. The swelling wasn’t responding to normal antihistamines and I saw 7 specialists before I finally found an immunologist who tested me for the vasculitis, and told me I have HUVS. Thanks to a miracle medicine for me, Xolair, I’m finally getting some of my “normal’ life back. The swelling is going down and I m starting to look like a person again, not the Stay Puff marshmallow man. Lol. What I’ve learned over 12 years of dealing with relentless RA/Lupus (and now HUVS) , is to take one day at a time. Eat well, exercise,, and when your feet hurt too badly to touch the ground, binge watch NetFlix.

Hi! I too have HUVS which is a sister condition of Lupus (so I have been told). I am currently on 200mg of Hydroxychloroquine twice daily with a reduced 1mg. pred every other day. I had a stroke 4 years ago after having a massive vasculitis attack. I was forced to take 40mg. of steroids when the vasculitis attack occurred and have been tapering down ever since. Still recovering from stroke but I speak, walk and look normal...just very weak muscle despite building it up with yoga. I have never heard of Xolair before. Will google this.

But you might ask your specialist about Hydroxy as this has put me in semi remission in that I have not had any skin issues. I tried so many other medications before - Azathioprine, Methotraxate, Mychophenolate to name a few...but non of them ever put me on semi remission. Due to weather change I am now experiencing joint pain but no swelling so far. So my specialist is really pleased. I won't be until I can get my energy of my main complaints at the moment as I want to be more active. Other than Prednisolone, what other medication are you on? Cheers!

Hi. Thanks for responding to me. I have taken hydroxy before specifically for my RA, but it really didn’t help me at all. Even methotrexate could not get me into semi-remission. Currently I’m not on any RA infusions because the biologic infusions cannot be taken concurrently with Xolair (which is also a biologic.). Xolair is an IgE inhibitor. It’s an injection usually for severe asthma or chronic urticaria. I’m using it for HUVS and it has been a godsend for the vasculitis and swelling. I’m still fighting the rash and hives, though. Also. My RA has gotten out of control because we had to stop treating it to get the HUVS under control. I’ve had a lot of improvement of the HUVS since I began the Xolair, however, I’m still swelling, but not nearly as badly. It’s just been a slow process. These are the other drugs my immunologist has me on to help both my regular allergies and autoimmune allergies: Xyzal, Benedryl, Zantac, and 10mg of Doxopen.


I have had similar experience recently while trying to taper off prednisolone. I have been on the drug for about 3 years since my GPA diagnosis. Started on 80mg per day after the IV doses and have had the full range of nasty side effects in that time including bilateral cataracts that needed surgery. I had got down to 5mg per day when I got the good news that I finally gone into remission. My consultant at Addenbrookes hospital was happy for me to continue to slowly reduce the steroids which I did by 1mg per month. I was ok on 4mg, semi ok on 3mg but as soon as I got to 2mg along came the symptoms of fatigue, low energy and joint pain that you describe. I have gone back up to 5mg and feel much better so will stay on this dose until my next vasculitis clinic appointment.

I had a test called synapthen at the last clinic appointment which is to determine how much cortisol my body is capable of making on its own. As prednisolone takes over supplying your body with cortisol at doses above about 7mg, you do not make any and in some people their adrenal gland does not restart the production hence you feel symptomatic at low prednisolone doses.

If I were you I would ask for this test as it may be that your body isn’t producing enough and still needs a low steroid dose to keep you feeling ok.

Hope this helps and you make some improvement soon.

PMRpro in reply to nicholson27

Just in case anyone DOES want to ask about it, the spelling is SYNACTHEN test.

nicholson27 in reply to PMRpro

Thank you for the correction. Not trying to mislead anyone, just pressed a wrong key.

PMRpro in reply to nicholson27

Didn't think for a moment it was delliberate! edical spelling is a language of its own...

I really feel for you. Have you tried organic CBD oil? I have found this very helpful last winter and am about to start again as the weather is getting chilly. I am in London and it is no problem getting it here but I suppose it could be a problem in US. If it is that you are looking for a temporary relief just to feel a bit better, I suppose you might raise Pred for three, four days but as you well know...steroids is just a daily solution with no future. I am now down to 1 mg every other day. It has taken me 4 years to come down from 10mg. And my God, I will not go back up unless it is the only solution to stay alive.

I think there are many alternatives to improve your depression. Cognitive therapy is one hypnotherapy and so many others. At home deep breathing for 5 to 10 minutes already calms you down and you can build this up slowly. Get yourself lots of self helps books (you probably do already!) as it may motivate you better. Medication is part of the solution and not all of it. You cannot rely on this alone. Don't lose hope on yourself. Do find a way to become help yourself. If you cannot help yourself, who can?? You probably know all this and have done this but hearing from another sufferer once again may help you which is why I am writing. Don't think of doing it all in one go. A state of mind and condition changes and improves very gradually. So build a self helping block little by little every day. Do a bit of simple stretching every hour or so as it will help with your joint pain.

Hope this helps! All the best!

ps And don't forget this is just a temporary set back! You will get better.

Hi Paprika,

Sorry for the belated response. Yes, CBD oil is legal , all over the US. I have tried it topically with a mild response. In my state of NJ, medical marijuana is legal and I was indeed accepted into the program.

It was really very easy to get approved on the basis of my MRIs and other imaging studies which were reviewed by a Physician's Assistant; everyone from the front desk ladies to the physician's assistant were most friendly and kind.

It is foremost a scheme for the State of NJ and other states to get more revenue. In 2-3 weeks after your appointment, you receive a "license" with photo, etc. from the NJ Dept of Health. The whole process costs about $250 + the cost of the "product" at the dispensary (not your local pharmacy). You can go online and see the "menu" for the day; ie. what is in stock, what is new, what may be on sale, what strains have been brought back by popular demand.

You register at a front desk. When your name is called you can get in a line to buy what you would like up to 2 ounces a month= $800. You can buy smaller amounts and return to buy more. All this must be paid for in cash because due to marijuana still listed as a banned substance at the federal level, the dispensaries cannot open a bank account or accept credit cards. Conveniently, there is an ATM in all dispensaries.

You can smoke it, cook with it, vape it, eat it in cookies or candy, etc. There are various gadgets to ingest it: vaporizers, vape pens, bongs or just the old fashioned rolled cigarettes"joint." I suppose you can make tea with it.

My first experience with legal marijuana was rather unexpected. I never learned how to "roll a joint." My husband rolls his cigarettes and did it for me. At about 2pm one day, my joints were screaming, my anxiety level soaring. I took 3 puffs. After about 10 minutes, I knew I had better lie down. My husband came home from the store to find me virtually unconscious. I could feel him take my arm, checking to make sure I was alive. I slept in a euphoric, paralyzed state, punctuated by fleeting thoughts, some of which were disturbing, but quick to disappear. I later learned that that particular strain of marijuana is referred to as "couchlock." on "the street."

It took about 6 hours before it wore off. There is no way one could drive, make an important decision, supervise children, let alone go to work. It has a place for insomnia, escapism, or if you have nothing better to do and are bored. I must admit it does kill pain and stop anxiety, but at a cost of becoming among the walking dead.

This legalization comes just at a time when opiate use is under extreme attack by the government, the media, politicians who know nothing about the neurology of pain and a whole new cottage industry of rehab centers, acupuncture for opiate withdrawal, magnetic bracelets that pull out pain, Suboxone etc.Doctors are being investigated or prosecuted for prescribing, some even losing their licenses.Maybe legal marijuana will become the new "opiate of the people, at least in NJ and other states where it is legal.

What is supposed to be medicine is marketed like lipsticks and eye make up, with names such as Cookie Wreck, Blue Dream, Purple Haze ; Blueberry Headband, Headband 818, you get the idea. There is a sense of play going on, and a hint of naughtiness.

This is a "medicine" that comes with no dosage, no info on how frequently to use; it is simply recreational marijuana in disguise as medicine. The packets do say the percentage of THC and CBD and other components of the plant and are dispensed with your name so if you happen to be stopped for a traffic violation, you can show the policeman, you are in legal possession.

If you have a spouse or a partner, it's not a bad aphrodisiac either.😴

I am not for it, or against it. It is what it is. I just wish governments would stay out of the private life of individuals and the confidentiality of the doctor-patient relationship.?

Dear Christophene,

I don't know how but I completely missed your response. A huge apology!

It seems like CBD oil in US is either very different from the ones we get here or they just charge you so much more. I don't know which. The most I paid was just short od £100 for 15 ml of oil in a tinture. It lasts a long time as I only use two to three drops a day. And I don't get my doctors involved either. Perhaps you wish to check just to see. Google CBD Brothers. The company is based in Norfolk UK and their products are all organic.

Take care.

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