Newly diagnosed, scary stuff

[Angex05]

Hi, I have just been diagnosed about 5 weeks ago. This is all very scary stuff to me as I'm an active 53 year old and now feel like a little old granny. I have just found this forum and it's full of very helpful stuff I didn't know and it does make me feel that I'm not alone in this journey. It appears it's going to be a very long one. My doc started me on 15mg of Pred which seemed to work within a couple of days until the second week I couldn't get out of bed again. He put it up to 20mg for a couple of days then told me to reduce to 15mg again. This past week I'm back on 20mg, the pain is getting worse again. It just feels like I'm never going to be pain free again 😞

[Celtic PMRGCAuk volunteer]

Hi Angex

If your 15mg starting dose worked well within a couple of days, did you overdo things rather than rest to allow the steroids to do their job of getting control over the inflammation? If so, you could expect to need a higher dose to allow you to get away with too much activity. Alas, if the higher dose helped and you still continued to overdo things, that won't have helped. Plus, it may have proved more successful if you had remained on the 20mg dose for a good couple of weeks rather than just a couple of days, taken things easy, and then just tried reducing to 17.5 rather than going straight back to 15mg. Do try taking things very easy for a couple of weeks at the 20mg dose to see if you feel better. If not, you may need to query the diagnosis.

[Angex05 in reply to Celtic]

Thanks for the response. I'm still trying to get my head round having this disease and it's not coming easy to me to take it easy. I'm always on the go 24/7. I am finding that after lunch I am so much better and can move easier so tend to fly around doing lots of jobs 😞

[PMRpro Ambassador in reply to Angex05]

Then it isn't surprising you feel bad again. You MUST learn to pace yourself and rest. It didn't come easy to any of us - but you will save yourself a lot of agony, both mental and physical, if you learn to do it.

The illness isn't the symptoms we call PMR - it is an underlying autoimmune disorder that is causing your immune system to not recognise your body as self so it attacks it as if it were an invading virus or bacterial infection. Tissues are damaged, inflammation causes swelling, pain and stiffness. Pred relieves that - but can't modify the underlying cause and that is what leads to the fatigue. You are still ill, the pred is helping the symptoms but not the disease.

You have a chronic illness in which your muscles are intolerant of exercise. You will be able to do more in time by building up what you do VERY slowly but for the moment you have to allow your body to heal, firstly allowing the pred to clear out the existing inflammation and letting those tissues heal. Then you have to do your part in not creating more excessive damage: the body releases another batch of cytokines, the inflammatory substances, every morning. You need to take pred as early in the morning as you can manage to relieve that new inflammation as soon as possible and then you need to manage your resources to last until tomorrow. Read this allegory of how we have to approach chronic autoimmune illness:

butyoudontlooksick.com/arti...

[Angex05 in reply to PMRpro]

Thank you, I have read the "spoons" and it makes perfect sense.

[Charlie1boy]

Hi Angex,

Your post caused me to look at my own notes when I was first diagnosed after Xmas 2014. I could barely get to the surgery 'cos I had probably delayed going for too long!

My GP started me at 20mg, but within a week she put me up to 30mg, where I stayed for just over 3 weeks; by this time the pain was much less, and I have been able to taper down to my current 10mg.

30mg is a high starting dose, but for me the pred lasts for just about 12 hours. 3 to 4 hours to kick in, then ok for about 12 hours or so. It is still the same now - just my metabolism I guess. I know 15mg is the recommended starting dose, but we are all different.

I really must endorse earlier advice to you to take it easy. We have all tried to do too much - sometimes on more than one occasion, and the pmr will, for sure, come back to bite. You HAVE to rest every day. Running about 24/7 is just not on!!!

Also, with pmr, do not try to taper down your pred dose too quickly. You will likely see advice about this every day on this forum. The sufferers know more than many GPs.

Finally, I recommend you get a copy of Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide (see Amazon), and "Living with pmr &gca", which you can get via pmr-gca northeast.org.uk. Neither is expensive.

I am not a medical person, but have had pmr now for 9 months, so have just given some of my experience. Keep in touch with this forum; you will find it invaluable.

Good luck.

[Angex05 in reply to Charlie1boy]

Thank you, I am finding this forum very helpful. I'm going to be very selfish this weekend and relax and just do the minimum. Here's hoping

[Derug]

Hi there sorry to here your struggling you didn't say what your crp was I was diagnosed about ten weeks ago my crp was 47 after two weeks it dropped to 14 sounds to me like you need to on a higher dose for a longer time to get the pain under control, I am on 20mg now was on 30mg hoping to drop down next week just had blood test to see crp level, I am not pain free but I am about 70 percent there some days 50 percent good days bad days been very tired this week hope this helps derug

[Dobermanlover]

Hi there, sorry that you are now one of us! Say that for the very best of reasons. I was diagnosed back in June and given 15 mg as a start off dose, when it didn't work as my doctor expected, he took me off them. The next day the pain and stiffness was excruciating, and it was a weekend, and he had gone on holiday! Anyway, to cut a very long story short, another doctor in the practice put me on 30 mg of pred, which he said was the old dose that was used as a start. It certainly worked for me, I was and still am, virtually pain and stiffness free, though the fatigue is a very difficult thing to come to terms with. I am 73, so had to face the fact that I couldn't do as much as I used to do, but this has hit me like a sledgehammer, always on the go, thought that nothing could stop me, just slow me down a bit. How wrong was I! I am now down to 22.5 mg, taking things very slowly and standing up for myself and going to another doctor to get 2.5 mg pred. That certainly worked for me, just dropping the 10% recommended on this site. I tried to go down by 5 mg, but the pain came back within 3 days. I have now seen a rheumy, who luckily confirmed that it was important not to drop more than 10%, and actually said that I shouldn't be surprised if I wouldn't be able to reduce more than to 5 mg. She has written to my doctor telling him this so I shouldn't have any more trouble there.

This site is wonderful, I am in awe of the people on here that have so many more problems than PMR, it has given me great confidence to stand up for myself, though I must admit to being a bit of a wimp at times when I finally get to the doctors surgery!

Maybe you should ask if you could start at a higher dose? As is said on this site, no one case is the same as another. I know it is not ideal to take higher doses, but to be in constant pain and unable to get out of bed is not in the least ideal! Do ask your doctor, or see another one if he/she doesn't agree, I am so glad that I did.

All the very best to you and to everyone else on this site who has helped me and many others come to terms with this pesky illness!

[poppetpain]

As PMR pro said,the body releases another batch of cytokines, the inflammatory substances, every morning around 4am. I find that taking my pred before bed with a bit of supper of a glass of milk has stopped my morning stiffness. I took them at 2am for a few months but got fed up with that hence now taking them as late as possible before bed. I was on 15 in Nov and gradually down to 10 by July. Am planning on reducing to 9.5 sometime in Oct but will use the very slow method found on this forum. I found a local support group and it was wonderful actually meeting folk with same problems. None of is can do what we used to but its not worth going against the advice found in this wonderful forum. Good luck. Mary x

[Angex05 in reply to poppetpain]

Thanks for the advice. Can I ask at what time does the stiffness come back when you take your meds at that time?

Ange

[poppetpain]

My stiffness doesn't come back at all apart from after sitting for ages. By blocking the inflammation before it gets into your system the next day is wonderful. I still get the fatigue most days but I know that's the illness beneath rather than me being worn out with the pain and effort to do things. Some folk take half at night and half in the morning and it helps. As you will realize from this forum, no two people are affected equally but the amount of suggestions is there for us to try on an individual basis. If you can cope with setting your alarm for 2am try that first with a glass of milk. If that helps after a while try to move the time towards bed time. It all revolves around confidence whether it's reducing or what so take it slowly and keep a diary of what's going on. You will be surprised at the progress it will show eventually. Click on my name to read my previous posts. Get back whenever you need help or just support. Mary xx

[Angex05 in reply to poppetpain]

Hi Mary

I took your advice and took my meds at 3am this morning. I'm now up at 7.30 with no stiffness and no pain. It's actually so wonderful, but now I have to be careful not to think I'm ok and start overdoing it. I'm at the docs later so it will be very interesting to see what he has to say. I have taken it very easy over the weekend, just basically done the lunch and dinners for my family and that's it.

I might make some big signs to put up around the house to make me rest and not feel guilty that I can't do everything, for a while anyway.

Hope you have a good day

Ange x

[Angex05]

This forum is so helpful and I would like to thank everyone who has messaged me. I have taken on board all advice given and have taken it very easy ALL weekend. I'm relatively pain free at the moment and it feels wonderful. I've been reading up and researching PMR, has anyone tried CURCUMIN? Be very interested to know if it really works.

Thanks again

Ange

[PamelAnneCT]

Hi Angex05 - we are the same age and I was diagnosed in June. I was started at 60mg because of GCA along with the PMR. These diseases are quite literally a pain to deal with. And when the pain isn't bad we want to get back to "normal", and then we're in pain again, and so goes the cycle over and over and.........

Getting my head around the reality of the situation is the toughest part of this whole thing for me. So now I'm OVERLY aware of how I'm feeling before I do anything, plan anything, and some days even think of doing something. Absolute craziness, which the pred doesn't help!

I see a naturopath as well as my GP and rheumy and she has me on supplements including Turmeric (curcumin). I believe that the supplements she has me on is the reason my sed rate dropped so low, from 67 to 5 in a month. I've also had some food sensitivities for a long time, which I'm bad about, which I am now being very careful about since they are well know, so no wheat, barley, rye, dairy and I avoid sugars as much as I possibly can.

This forum has been amazing source of support, even from so far away as I'm in the U.S. Pay attention to what your body, and all the wise souls on this site, tell you. This is a new chapter in your life, and the only person who can take care of you is you.

Pam

[Angex05 in reply to PamelAnneCT]

Hi Pam

It says in the literature my doc gave me that this disease usually strikes people in their 70's, I feel that age now, is probably what it should say.

It amazes me all the different doses that are prescribed for us all who have the same disease. I agree that the hardest part is getting your head around actually having such a horrible disease. I'm 6 weeks in and still struggling to let it change my life. I have 3 children at home and I'm also a foster carer, no foster children with me at the moment, thank goodness.

I'm so glad I found this forum as it has taught me so much and I find as soon as I post a question everyone answers straight away.

I'm going to see about getting some curcumin today. I haven't got a clue what a sed rate is though lol

[PamelAnneCT in reply to Angex05]

Sedimentation rate, probably checked when you were diagnosed. It's one of the key things docs look at when figuring out what's going on with us.

[j-e-a-n]

Hi I was newly diagnosed last week after 6 weeks of agonising pain and practically no sleep. Had a million blood tests, Xray, Brain scan etc and then a biopsy which confirmed the GCA. Had massive doses of pred in hospital then they sent me home with a dosage of 40 mg which left me nearly as bad as when it started. Now up to 60 and a lot better but hadn't realised the importance of resting. I spent another 7 hours yesterday in A&E as I had double vision in one eye for about 10 minutes in the morning. No chance to rest in a hospital, and anyway two and a half hours waiting before someone even saw me didn't give me much confidence. Wake up in the early hours, very little pain but then my brain won't shut off, so I am always tired at the moment. Glad I found this site, will be very helpful.

[Angex05]

Hi,

I've been back to my doctors today and he has agreed to keep me on 20mg for the following week and then reduce to 15mg for 3 weeks and to go see him again. I'm also on a 10mg patch of morphine which I've got to reduce to a 5mg patch on Wednesday 😩

After taking my Pred at 3am and resting a lot today, I've had a pain and stiffness free day. So happy to feel normal for the day. Fingers crossed for tomorrow

Ange

[Lafontainepam1 in reply to Angex05]

Sorry to say this but going from 20 mg down to 15 is no good. Your body does not take a drop of 5 mg very well, you will likely be right back up to 20. And yes listen to us, you cannot over do, REST when you get tired or you will pay the piper dearly, I have had it for over 4 years and are fighting to stay below 5mg. I am now doing the altering of 5-4 and that will take a good month at the least! Please be patient!😎

[Angex05 in reply to Lafontainepam1]

I've just been to my doctors surgery and practically demanded they prescribe some 2.5mg Pred, quoting from this forum how it's not advisable to drop from 20-15mg. I will now be going from 20-17.7mg on Monday. Fingers crossed

Ange

[Robnc]

53 year old male, just diagnosed 4 weeks ago. I'm currently on 30mg prednisone every other day. Will be a week tomorrow on this dosing. Was doing what you are, preferring 20 mg a day. I'm very active also. The every other day thing has been a bit rough, but going to stick with it a while longer.

[HeronNS in reply to Robnc]

Let us know how the alternating dosing goes, Robnc.

[Robnc in reply to HeronNS]

Hi HeronNS...I was struggling with every other day dosing of 30mg pred. I switched to 15mg every day dosing at 130am. I felt better, but woke up stiff , feeling 50%. I took the 15mg. at 10pm last night and feel better than 90% this morning. I participate willingly in the labor end of a design build landscape company I own. I was also working out several days a week. Thanks to the wonderful folks in this community , l'm understanding what my body is dealing with....what it can and can't do. I was beggining to wonder if I should go to 20mg pred daily due to continued morning stiffness, but will give the evening dosing a try and let you know how it goes. My plan is to moderate my physical activity to stay with 15mg. Thanks again to everyone.

[HeronNS in reply to Robnc]

Yes, Robnc, I'm beginning to think that, at least in my case and at this particular stage (things may change), managing my activity level is almost as important as the pred dose.