PET-CT SCANS

Hi Eileen,

This question to you is not about the above. However, over the years I have come to value your advice and wit. So, having followed your slow weaning, in May, after 4 years of Pred, I finally was able to stop.

Within days, I developed a very strange sensation on my body, hands and feet. It is a sort of very uncomfortable tingling. It is very often caused by slight pressure, as in stirring a pot with a wooden spoon, or putting on a shoe. The skin gets red and then the whole business fades, and appears somewhere else. My GP does not know what it is, and saw an internist who does not know either. It is not a rash. More like a sensation under the skin.

I was wondering if anyone else has had this come up after Pred. 

It is completely maddening!

I would appreciate any thoughts,

 

How very strange - no, I can't remember anyone complaining of that sort of thing before. I get a strange tingling down the left side of my neck and into the bicep, almost like someone tickling the skin but there is no rash at all and it just happens, always in the same place - it started after I was switched from warfarin to one of the new generation anticoagulants. Coincidence? Who knows!

Your description sounds maybe like something triggering small nerves and causing local vasodilation (dilation of the blood vessels) for some reason. I'd think a neurologist or dermatologist might be a better bet than an internist though - a neurologist, I think I'd prefer. There are neuropathies/parathesias  that cause that sort of sensation but whether they also cause the reddening I don't know. One word for it is formication - like ants crawling on the skin.

It's great you have managed to get off pred - but I suppose it COULD be a withdrawal reaction or something that was masked by even very low doses. I'm always pleased to hear DSANS has worked for someone!

And do please tell me if anyone ever works out what your creepy crawlies are!

I think it was the second night after I started pred (15 mg) for hours I felt like "things" were crawling under my skin.  Unsettling.  But never since.  I suppose it must have been something to do with the blood vessels responding to the anti-inflammatory action of pred.

Hi,

I,too, thought that the Pred might be suppressing something, but both doctors maintain that the very low doses I was taking would not do anything.

I will pursue the neurologist idea. It certainly feels like to do with the nerves and small blood vessels. Because there was some thought that PMR is really the inflamation of blood vessels, I thought this might be an off shoot of the condition and that someone else could have experienced it.

Thank you for the quick, thoughtful response.

If I find anything out I will inform.

 

There are plenty of people who have been fine on 1 or 2mg over a long period, only to develop a flare of PMR within a few months of finally stopping it! The really good doctors don't suggest that a low dose isn't "doing anything" - and I know a few nurses who say they think even 1mg is definitely achieving something.

When you think about it if, while we taper, our bodies are sensitive to drops or increases in dosage as little as .5 mg, we would remain sensitive to removing pred completely, even from a dose as low as 1or .5 mg.

Exactly...

Hi Eileen

Dont know if this is the same as Yvonne mentioned but since i started to taper below 5mg i have developed a strange sensation in my back just below my shoulder blades .How to explain it -a cold tingly feeling just comes and goes .

I had that too - it was due to myofascial pain syndrome where the pair of trigger points that can form at rib level were irritating nerve round into the ribs and into the shoulder blade area. Since the myofascial pain syndrome has been sorted out - I hardly ever get the feeling, only after I've been sitting at the computer for far too long!

Thanks Eileen .Will see into that .Greatly appreciate all your tips and advice .

It has taken me a while to have the opportunity to report . I have been taking care of my daughters family while my grandson has been in hospital. 

Feeling that it was significant that this strange new condition occurred as I stopped the 1mg of Prednisone, I started taking 5mgs again. After a few days the maddening condition improved and although I believe it is still present, It is not bothering me much. I suppose if I took more I would suppress it completely, but would rather not take a bigger dose.

I have not had the chance to see a neurologist due to this terrible period of my 10 year old grandsons illness, but will whenever I can get an appointment.

By the way, my daughter, who is a vetinarian, said she thought that the redness looked like a release of histamines, but the anti histamines did not help.

I will post if there is anything interesting to share.

I am so sorry to hear about your grandson.  Illness in a family member is never easy, and it's so much worse with a young person.  It is good that you are able to help out.  ??

Thank you for your kind words. There is a chance he will go home today after 4 weeks, 4 transfusions, steroids, anti biotics, Remicaid and finally Surgery to remove his colon!

He is only 10 yrs old.

He has been remarkable !

Wishing him all the best - what was it? Necrotic bowel?

Hi Eileen,

we are waiting for the pathology, but the doctors believe that it was ulcerative colitis. They could not control the bleeding, so surgery was the only solution. We are so sad for him. He has been very brave and uncomplaining and we are hoping that the j-bag surgery starting in 6 months will possible.

 

What a big change for a child of that age - hope all the rest goes well. 

When I lived in the UK I knew someone whose wife has UC. She was in and out of hospital but refused to have surgery - and was so weak and unable to do anything. In the end she had emergency surgery like your grandson. I don't know how she got on - but I know of quite a few people who say later thay wish they'd had surgery far sooner, they felt they got their life back. He's young and didn't know the really bad bit - but I'm sure he'll cope far better than the adults in the family expect.

PS - do hope the J-pouch is successful.