So now told no prednisone!? So confused.😕

[misaryk]

Hi everyone, seen my rheumatologist on Thursday, I was hoping she would listen to what I had to say. I even brought print outs of the responses you folks so kindly gave me in regards to it being possible to have normal ESR and CRP and being 50. Didn't take much notice to that, she is going to do some more tests in 2 weeks after the prednisone is more out of my system. I was shocked she didn't want to wean me down at least to 5 mg then 2mg then nothing. Just stopped me at 10 mg I ran out and then plan was to be off at 10mg. Not feeling very well. Could she be testing to see if I have a flare or something? She said my jaw pain was arthritis in my jaw. I am feeling kind of swept under the rug again. Any thoughts? Thanks

[CloudGazer6]

Hello. Yes, it's possible that she needs to see what happens if you stop the prednisolone. She just may not have stated it that obviously as in rheumatology and other specialities that frequently use prednisolone as a first-line treatment it can be standard practice - we just don't always get told that as patients. I've been in that situation a few times now as my markers are normal and it's the plan I've agreed with my rheumatologist as it's the only way to see what symptoms might emerge. I'm willing to go along with the plan as I would like to have a formal diagnosis, whatever that may be.

It may feel like a frustratingly crude measure but in my case it's been a very useful way to gather more information. It has also helped me understand that the diagnostic pathways in vasculitis can be complex and lengthy, especially in cases where we fall into the category of being at the younger end of the age range and with normal blood results.

I hope it helps reassure you that this way you are being kept under close observation with more blood tests soon. I hope you don't feel too unwell but if you do at least you have a rapid point of contact. When I became more unwell when I was asked to stop pred at 10mg that's when the rheum team was able to gather more information and monitor me much more closely.

[misaryk in reply to CloudGazer6]

Thank you that is making some sense to me. Thanks for taking the time for replying. I thought she was just being mean and saying to bad for you I don't care what the reason was why you were put on it., no more prednisone for you.

[SheffieldJane in reply to misaryk]

Sounds like she's a poor communicator, who leaves you deflated and scared.

Having read on here about people who have been on Prednisolone for years and ended up with two cataracts, type 2 diabetes, osteoporosis and that's just the major things. I want to make damn sure I have to have it. Even if I'm bed bound for the experiment. Cloudgazer6 talks a lot of sense. Look after yourself really well, rest plenty, pain killers when needed, wholesome food, minimum stress. Sending you healing energy and love Mysaryk. X

[misaryk in reply to SheffieldJane]

Thank you so much for your warmth and compassion. All I have for pain is T3s but they help a little bit. 😊

[Sheilamac in reply to misaryk]

Unfortunately, if it is PMR or GCA painkillers make little or no difference to the pain. I do hope you get sorted out soon.

[Carriacou1937 in reply to SheffieldJane]

Add to the list Avascular Necrisis. I needed a hip replacement, and I am now recovering from a reverse shoulder replacement. I may need to have surgery on other shoulder when this one heals. Steroid induced,and no warning that this could happen.

[Celtic PMRGCAuk volunteer in reply to Carriacou1937]

Carriacou, were you taking Alendronic Acid alongside the steroids? AA carries a risk of necrosis to the jaw bone and femur in rare cases and should not be taken for more than 5 years without a break.

[Carriacou1937 in reply to Celtic]

Dear Celtic I took Alendronic Acid for about 3 months. I was aware of the threat of Necrosis of the jaw. I noted Pmrpro's comments on AA and mixed results found, and stopped taking it.

I am told it is pretty rare to develop Avascular Necrosis with steroids. I was on a roller oaster with Pred. for four years.

My point is that patients should be warned and steps taken to reduce the dose. I just could not get below 15mg without a flare.

The info sheet in the Pred packet fails to mention AVN in the side effects.

Went on to Methrotrexate and Hydroxychloquinine..

I have just moved to Edinburgh from Bournemouth and hope for a second opinion on the whole diagnosis and treatment.

Best Wishes, Joan

[Celtic PMRGCAuk volunteer in reply to Carriacou1937]

Joan, that's rotten luck if it was the steroids. I suppose it's most unlikely to have been due to the AA after just 3 months on it, but never say never! Did you have a DEXA scan at any time either before treatment or early on in the treatment to show whether you had any thinning of the bones?

Now that you have moved to Edinburgh, are you aware that PMRGCA Scotland (the very first Charity for PMR in the UK) have a support group that meets in Edinburgh? More information on the following link: pmrgca.co.uk/group-pages/sc...

[Carriacou1937 in reply to Celtic]

Thank you Celtic for Scottish Website. Yes, I had a Dexa two years ago. Result Osteopenia of lower spine. I hope to register with GP today, an expert in joint and muscle disorders. Praying that he would take me on. Will post what transpired.

Take care, Joan.

[misaryk in reply to Celtic]

Hi thank you for replying. I just started prednisone on July 29 2016 reason was for sudden stabbing pain in right eye and sore temple and scalp. Was started at 50 mg the 5 days later 40mg and drop every 5 days by 10mg then to 0. Was suppose to have a arterial biopsy but eye clinic doc never did it. 3 other doctors recommendedit be done, but because ESR and CRP was normal didn't follow through with it.

[CloudGazer6 in reply to misaryk]

That does sound like an unusually fast reduction plan if you have had a presumptive GCA diagnosis. I came down to zero from 15g the first time we did the 'symptom challenge'. Then I did it the second time more slowly as I was coming down from 60mg.

Your consultant may still be wanting to see what happens to your symptoms but you might feel more reassured if she could give you some pointers for when to seek help if you experience certain symptoms. I know you what these are - it's more the having of the conversation so that she is aware that you're worried. It can be very difficult to ask at the time of the appointment. I asked which symptoms should I act upon and how, and I think that helped emphasise that I was feeling quite ill even if I didn't appear so - we are all very good at looking OK or at least vaguely competent at getting dressed for hospital outings, I suspect! Perhaps your team has a specialist nurse helpline you could call if it's not easy to speak to your consultant.

[paddyfields in reply to Celtic]

More recent NICE inf. indicates that there is little benefit after more than three years from bisphonates which ties in exactly with my experience of moving out of the osteopenia zone to normal after three years of various bisphnates. I had stopped ibandronic acid anyway and my doctor had agreed once he had come up with the phrase "bisphonates holiday" Sorry about the spelling.

[sookiesue]

I cannot understand being taken off Prednisolone at 10mg. All the information I have been given and from experience, tells me to gradually reduce is the ONLY way. It may have been your doctor's 'bad day'.

[CloudGazer6 in reply to sookiesue]

It depends on each individual person's previous treatment plan, how long they have been on prednisolone and at what dose. Also, if the reason for the rapid reduction is to see if symptoms re-appear, a very slow reduction would mask this process and the decisions about treatment and formal diagnosis would be delayed for longer but without adequate help.

[misaryk in reply to sookiesue]

I know she did just get back from holidays and was very busy and backed up that day. So who knows maybe she was cranky. Lol but I thought stopping at 10mg wasn't a good thing either. 😕

[Celtic PMRGCAuk volunteer]

Oh dear, misaryk, what a worrying and frustrating time for you but, as Cloudgazer has suggested, sometimes the experts treating you need to go back to the drawing board to get a clear picture of what is going on. At least you now have a point of contact for the future - hopefully you have a telephone number for this rheumatologist - but our original advice still stands: if you suddenly have any changes in your vision, seek immediate advice.

[jinasc]

Everything I have been told or read over the past 10 years talks about stopping pred abruptly after being on it longer than two weeks is a no no.

Maybe I am wrong but............ this was published on 19 May 2016.

Steroid use cannot be stopped abruptly; tapering the drug gives the adrenal glands time to return to their normal patterns of secretion. Withdrawal symptoms and signs (weakness, fatigue, decreased appetite, weight loss, nausea, vomiting, diarrhea, abdominal pain) can mimic many other medical problems.

I think I would be talking to my GP.

[misaryk in reply to jinasc]

I know that's what I have read too, so I was very surprised she didn't prescribe enough so I could wean down more gradual. Instead of just stop at 10 mg.

[sookiesue in reply to jinasc]

Thank you Sambucca for your response. It cannot be reiterated enough that steroids ie. Prednisolone cannot be stopped abruptly. A slow reduction is the only way to see if your symptoms return and what action is then to be taken.

[misaryk in reply to sookiesue]

Yes I agree with everyone I feel that I should have been cut off at 10 mg either. When I said oh should I go down to like 7 then 5 then 0? She just said no, use what you have left and that's that.

[PMRpro Ambassador in reply to misaryk]

Just keep an eye on how you feel and if you feel poorly/very tired get to your GP quickly. You should be OK but if it were me I'd discuss it with the GP first and I would drop the dose so you have a couple of days of about 7mg left just in case. If you feel really poorly - call 999 and tell them all about the situation. They know what to do in adrenal crises.

[misaryk in reply to PMRpro]

I have done it so I was able to go from 10 mg to have two days at 5 mg. but today my eye pain is back and I have a headache again on right side. Same side as eye pain, and neck and shoulders very sore.

[PMRpro Ambassador in reply to misaryk]

Go straight to A&E if it gets any worse, call 999 if necessary and tell them everything. They can get a rheumatologist or eye specialist to see you - it may not be the same one (which may not be a bad thing).

[misaryk in reply to PMRpro]

Yes I am starting to think the more doctor opinions maybe the better. Maybe they can average out their diagnoses and come an agreement. 😜

[jinasc in reply to misaryk]

As PMRpor says, do not delay - your eyesight is very very precious.

[misaryk in reply to jinasc]

Yes you are right. I will go to the ER if it gets any worse. Thank you for your concern.

[jinasc]

In the vernacular, 'go canny' but ring your GP and tell them what has happened - belts and braces.

Mind I would think hard about a change of Rheumy.

[misaryk in reply to jinasc]

Thank you for replying, I have been kind of thinking about possibly changing my Rheumy. I was very shocked that she did not prescribe lower dose prednisone so I could continue lowering the dosage at a slow pace like o have read and all of you have mentioned.