new diagnosis PR

How low have you been told to drop the dose? Daily reductions are a bit strange...

Hi Eileen,

6 x 4 days,then 5,4,3 and staying in two. However my doc gave me 40 for the first dose last time, then 5 for the rest of the week.  Seeing him again today.  Head thumping.... I would suspect blood pressure but don't have it! 

Yes, as I think we said above there may well be a negative result.  This doesn't mean you don't have GCA, only that the giant cells they were looking for didn't show up in the sample.  A positive result is useful because then no one can dispute the diagnosis.  This is why we are told that symptoms must always take priority.  Test results may or may not support the diagnosis but protecting vision is the main point.  

Unfortunately the biopsy is only positive in less than 50% of cases - and for a lot of reasons, not that you don't have GCA. It shoud ALWAYS be a clinical decision - on the basis of symptoms and supported by blood tests and biopsy but they are only incidental. 

10mg is about as much use in GCA as spitting on a raging fire...

That is very helpful about the biopsy stats. It will happen tomorrow. My doc tells me 60 is right for me/my weight etc. She's just needs to do the tests and she is rushing me through the system. 

I am sure you must know how vitally helpful your sharings are. Thank you for bothering - you have already saved me some pitfalls on this intense journey.

I had the biopsy yesterday. Awful. Blood spurted everywhere. The Nurse came in and said "this looks like a crime scene". Ha not ha!  Anyway it's done. I have a bloodied band aid on my temple for 48 hrs. Though I am a strong adult I miss my mother .Today I decided to up my dosage since I have the 5mg pills. Hoping 15 is the magic number for the PMR and then see about the GCA. 

Hope the surgeon was better at finding the bit of artery he wanted! 

Hi, my tests were negative also, but PCP started me on pred, and my being pain free within 5 hours confirmed PMR for him. The rheumy I went to later needed some "trying" from me, and she had also had some young Drs assist for a short time, and they both shared to me and my Dr that now they are trained to treat the patient NOT the tests

Hi Fiona, there is no diagnosis facility for PMR as such, it really is a matter of discounting everything else. High inflammation markers as part of a blood test can give a clue, but around twenty per cent of the population never have increased markers, which is a problem for doctors. Taking steroids for a week and seeing if they give a magical effect is one way of determining it is probably PMR. Do you think they would try a short trial on steroids say 15-20mg? You can stop immediately if they do not work as you will not have been taking them for very long.

There are no truly negative tests for either PMR or GCA.. Up to about 20% of patients with either do not have raised blood markers so them being "in normal range" is not truly negative. The biopsy is also not conclusive - positive is 100% positive but negative just means they did not find the giant cells they were looking for and there are several reasons for that: they form what are called skip lesions - there are areas with none, the temporal artery itself isn't affected - but others are, poor surgical skills, poor histological skills and a few others.

PMR and GCA are CLINICAL diagnoses, made on the basis of the suspicions due to symptoms together with supporting evidence if you can find any , and ruling out other options, of which there are several. That is what makes it difficult. But in the case of GCA in particular - you err on the side of caution and if a suitable dose of pred deals with the symptoms - you have possibly saved the patient from permanent loss of vision.

I am weighing self-medicating. Currently on 10 - no difference. Doc suggests I go back to 5 - makes no sense to me. Yes I will try 15 for a week. Be my own doctor. My doc did such a turnaround, it really confused me. Based on symptoms she suggested PMR. With the test results she suddenly became afraid of  side effects, risks etc. even though I told her that based on info, tests were often not an indicator. I was willing to take the steroid risk, not the doc though. I'll decide for myself then. Thank you.

Thank you once again. I am putting myself on 15 starting today as a tester. Next week I see an eye doc to eliminate anything else. Awaiting appt with internist.

That really seems quite typical - they plump on a diagnosis that has only one drug for management. Then spend all their time either denying it to you or trying to get you off it asap. Crackers...

Okay I took 15mg. Will pay close attention to the next few hrs. I should probably not take anything else, ie turmeric, magnesium while I do this test?

 It's a bit scary because there is so much fear around prednisone but I really do feel the need to know.,

 

I've been on it for 8 years - hasn't killed me yet but it has given me my life back.

Eileen you are so knowledgeable, I am scared to up the dose, I am on 16mg of pred since 1june then will go down another 1mg 1 July, the stiffness has started to come back, I spoke to my GP and was told they could give me naproxen to take with the pred rather than increase again. Has anyone else been told that. Also has anyone else getting blood blisters which quite often happens when your skin becomes thin, lovely mauve patches on my arms, is this another side affect of pred. I have only been on pred since March, sweats breathlessness nearly two stone in weight. Stopped eating carbs and have maintained the weight for two weeks yippee. I should be grateful that I don't seem to have the tiredness that seems to be another side affect. I am on holiday next week for 10 days not sure how to cope with walking when the stiffness sets in.

Thank you

The bruising is quite common, and people are avised to use arnica.  I didn't get that bad so didn't need to seek out arnica, but I understand it helps the bruises to heal more quickly.  Good for you with the carbs!  I find I no longer crave sweet things, I now crave, believe it or not, leafy greens!  Have you tried a nice long soak in a bath with Epsom salts?  That used to help me back in the days when I felt stiff in the evening.  Epsom salts contain magnesium which is absorbed by the skin and that may help your symptoms without your having to resort to either other medications or an increase in pred.  I also still have a cup of ginger tea in the evenings, made with freshly grated ginger, about 1 tsp steeped for about fifteen minutes.  

I know Eileen will have good suggestions, and reassurance, for you regarding pred dosage.

Hi Margaret, I get the red patches on my arms and sometimes legs too. They are called purpura. Mine have improved as I reduce but I still get them. I get a cheap thrill with bouncing them each day! 

Naproxen does pretty well NOTHING for PMR, your GP should know that. They should also know that Naproxen is considered contra indicative with pred and they should normally not be taken together. I cannot believe that your doctor is suggesting a drug such as Naproxen for PMR with your pred. This what drugs dot com says:

Using predniSONE together with naproxen may increase the risk of side effects in the gastrointestinal tract such as inflammation, bleeding, ulceration, and rarely, perforation. Gastrointestinal perforation is a potentially fatal condition and medical emergency where a hole forms all the way through the stomach or intestine. You should take these medications with food to lessen the risk. Talk to your doctor if you have any questions or concerns. Your doctor may be able to prescribe alternatives that do not interact, or you may need a dose adjustment or more frequent monitoring to safely use both medications. Your doctor may also be able to recommend medications to help protect the stomach and intestine if you are at high risk for developing serious gastrointestinal complications. You should seek immediate medical attention if you experience any unusual bleeding or bruising, or have other signs and symptoms of bleeding such as dizziness; lightheadedness; red or black, tarry stools; coughing up or vomiting fresh or dried blood that looks like coffee grounds; severe headache; and weakness. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Sometimes I wonder about the pharmaceutical knowledge of too many doctors! NSAIDs should not be used alongside pred - both cause gastric irritation, taking both together makes it worse. And Naproxen will do nothing for PMR pain and stiffness - it might help other things but even so, it really isn't advisable.

Your purple patches are a side effect of pred, it makes the tiny blood vessels fragile, it will get better as the dose reduces. In the meantime make sure you moisturise well. Arnica helps with ordinary bruising - never tried it for the petechiae (the posh name).

When you are on holiday it is less the stiffness that is a problem - I found that improved with activity - but the fact your muscles are intolerant of acute exercise. Don't head off on a day's treck, even just round the shops, or you will be likely to suffer the next day! Don't know what sort of holliday it is - but think hard about days out: could you/would you manage it at home? If you couldn't - you won't manage it just because you are on holiday.

Well done with the carbs - it gets easier and I even lost weight with care and discipline.

I don't wonder, I know...............and I keep on repeating this...........

The golden rule is

take no knew prescription, buy over the counter, of use hoemopathy, till you have spoken with a qualified pharmacist.

Tell them, if they are not your regular pharmacist all the medication you are taking.   The know about 'compatibility' no one else does and this is because they are trained for 7 years and the last year has to be spent working under a qualified pharmacist before they are let loose on the public.

Think about when you visit your GP and he decides to give you a prescription,  many times he picks up his drug book and then decides on the one he wants to prescribe.    

The GP is the front line and so is the Pharmacist.     

 

Oops EIleen, that posting was not meant for you............No edit button to put it in the right place.

WWONE

A similar warning is included on the sheet given to me by pharmacy when I filled first pred prescription.  I wonder if pharmacist would catch this if I were to show up with prescription for naproxen or similar?  Of course they'd never know if I bought otc aleve.  It's a dangerous world we're living in!

Hi Anhaga, I reckon my pharmacist might catch it, she is pretty impressive on her drug knowledge. She often goes through the drugs people are taking to ensure there are no problems and to see if some could be reduced or cut out. I am so impressed with her. As it is a small village she may even be aware of people buying OTC products as she knows the prescription items they are taking. Also she is really pleasant and not at all pompous, she talks to you on the same level, a breath of fresh air in fact.