Help please

[Kuipersr2]

Hello. Diagnosed with PMR two weeks ago. Blood work showed high inflammatory marker. Pain and stiffness in both shoulders, both hips, both back thighs up to buttocks. Also, a lot of stiffness on both sides of upper groin. PCP put me on 20mg of prednisone. I feel better but my mornings after sleep/inactivity are still challenging especially my shoulders. Difficult raising my arms in the morning. Is this normal or is this a sign the prednisone is not working or it’s something else other than PMR? No headache or vision issues.

[SheffieldJane]

It will take a little longer for the Prednisalone to kick in properly, you may end up needing more if you aren’t 70% relieved in about a week. This was the stage when I spent a fortune on special pillows and easy clothes to get into and a few gadgets to help me reach things etc. If your diagnosis is correct, relief is on its way. You will need help though. I couldn’t get into the bath or out of bed, the groin pain was the killer for me and I’ll never forget the shoulder pain and being unable to raise my hands above my waist. Please don’t do too much when the pain eases, you will still be ill. Pred is dealing with the inflammation not the underlying disease. You must pace your activities and rest a great deal. PMR can be managed well on the right dose of Pred though and subsequent slow tapering. Have a look at FAQs on here to find out how.

[Kuipersr2 in reply to SheffieldJane]

Thank you very much for responding and the great information you shared. I wonder if PCP will up it or refer me to rheumatologist. Hope it’s not RA. With the apparent cardiovascular risks of PMR and prednisone do you think I should be on a statin? 63 years old with medication managed blood pressure and low good cholesterol.

[SheffieldJane in reply to Kuipersr2]

PMR can be managed at PCP level and often is. If your case in unusual or there is a chance of RA they may refer you to a rheumatologist .Is the cardiovascular risk something peculiar to you? It is not something that was particularly flagged up to me until I developed GCA. My blood pressure did go up due to steroids and I am on meds for that. I haven’t wanted to take a statin, unlike you my cholesterol is a bit raised after 6 years. I have tried to keep my drugs simple so far. They all come with challenges/ side effects of their own. Ask for a DEXA bone scan so you can gauge how your bone density is doing on-going. The headache and vision issues along with jaw claudication are more the signs of PMR’s big sister GCA. Then medical attention becomes urgent.

[Kuipersr2 in reply to SheffieldJane]

Do you have any experience or opinions on DMARD medications, such as methotrexate? Do PCP’s prescribe these or just the rheumatologist?

[SheffieldJane in reply to Kuipersr2]

You are right in thinking the management of Methotrexate is usually undertaken by. rheumatologist. This drug is prescribed for patients who are having difficulty in reducing their Prednisalone dose. It needs to be monitored with blood tests in case of liver damage. It comes with potentially serious side effects and should be considered with care. FAQs. Has a full section, on it.

[Kuipersr2 in reply to SheffieldJane]

Thank you. You have been very helpful!

[Meggsy]

Just wondering what time you take your pred. If it is at breakfast time you might think about taking it earlier. Many people take it around 3 or 4am so that the pred has taken care of the inflammation by the time you rise. The inflammatory substances called cytokines are released into the body around 4am.

[Kuipersr2 in reply to Meggsy]

Very interesting! I will try that. Thank you!

[Bea61 in reply to Meggsy]

Hi Meggsy, just wondering about the 4a.m. release of cytokines -how precise is this as haven't heard this before and always awake at this time...

[DorsetLady PMRGCAuk volunteer in reply to Bea61]

If very often talked about on here…there is plenty of info online -but around 4am is usual time they are released

[PMRpro Ambassador in reply to Bea61]

4-4.30am is the usual timescale. It is part of the circadian rhythm that your body operates in

[Meggsy in reply to Bea61]

Hi Bea61 - I read about it on this forum and have taken my pred around this time for over 4 years. It works for me. I just line up pred, banana and water on the bedside table. If the banana is large I just eat half. I no longer set an alarm as I wake anyway around that time, sometimes earlier, sometimes a little later. 🌻

[PMRCanada in reply to Meggsy]

I tried the 2am routine of taking pred and lasted less than a year which included mishaps such as sleeping through my dose, dropping pills in the dark and not realizing till the next day when symptoms emerged, not to mention waking up hubby.

Then I bought some empty enteric capsules online and stuff my uncoated pred dose inside, allowing me to take my dose 10:30-11pm instead of getting up in the wee hours of the morning (my dose on-boards around 2-3am).

Just a suggestion you might find helpful, but if your system works, great. As long as the morning stiffness is alleviated, then whatever method works.

[Kuipersr2 in reply to PMRCanada]

Thank you. I like your idea. Interrupted sleep every night probably not good for overall health.

[Meggsy in reply to PMRCanada]

Yes I agree, we need to find whatever works for us. I recently stopped setting the alarm and have been waking around 5.30am this last week and taking it then with no morning stiffness. I’m hoping that is a good sign as it wouldn’t have worked 4 years ago. Presently on 1.25mg

[Bcol]

Good morning Kuipersr2. Sorry you have PMR and welcome to the forum. When you some moments of time a browse through the FAQ's will often answer many of the questions which I'm sure you must have. You will probably get a mixed response regarding Statins, some forum members take them with no problems, although it often takes a while to find which one suits you best, they can exacerbate joint pain. Others can't take them at all. If the doctor is not recommending them then I would probably give them a miss. I'm in my third year and have only worked with my GP. I take my Pred around 02:00-03:00 which has always worked well for me. As mentioned by Meggsy.

[Kuipersr2 in reply to Bcol]

Thank you for your input!

[Koalajane]

Hi, it would be very useful if you could complete your profile so others can give you more help. Thank you

[Kuipersr2 in reply to Koalajane]

I completed my profile. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Kuipersr2]

Can you put a bit in your bio as well please - go to profile and it’s just under your banner/picture where it says “Hi, I’m Kuipersr2”

[Kuipersr2 in reply to DorsetLady]

Done. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Kuipersr2]

Thank you …

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Maybe have a look at this link for more info about your illness - and as others have said give your medication a little more time to work -

healthunlocked.com/pmrgcauk...

[Kuipersr2 in reply to DorsetLady]

What a wealth of information! Thank you so much!

[PMRpro Ambassador]

The morning stiffness is a normal experience - as already mentioned the inflammatory substances are released about 4-4.30am and until the new day's dose of pred takes effect they start causing inflammation which is what causes the symptoms. The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person so if you are towards the 12 hour end, the symptoms may reappear before the next dose is due. In the first weeks, until the existing accumulated inflammation is cleared out this is more likely as the baseline is higher. If it doesn't improve after about a month it is possibly worth considering splitting the dose, taking the majority of it in the morning and the rest a bit later to extend the effect to 24 hours. But there is time for that.

One way to help that morning stiffness is to do stretches in a warm shower - and we used o suggest using an electric blanket BEFORE getting out of bed so your muscles were already warm and easier to move - it works well for many people. I had PMR for 5 years without pred and every morning Mon-Fri I did an aquafit class in a warm pool - after which I was able to do a Pilates or Iyengha yoga class! And that set me up for the rest of the day! It was only that that kept me upright and mobile. I have to admit - pred is better and easier to time manage

[Kuipersr2 in reply to PMRpro]

Great advise! My wife and I are contemplating installing a hut tub. Could be very beneficial! I will apply your suggestions.

[PMRpro Ambassador in reply to Kuipersr2]

I used the hot tub at the gym occasionally but I preferred the sauna, Careful to keep the jets properly clean - they sprout bacteria like a good 'un!!!

[Kuipersr2 in reply to PMRpro]

That’s true. I will carefully explore my options to ease my morning pain.

[PMRCanada in reply to Kuipersr2]

Our hot tub was invaluable to me for what it’s worth. As PMRPro mentioned regular maintenance/cleaning is key. We completely drained and changed our water every spring and fall and cleaned the jets thoroughly while it was drained.

[LabradorH]

Hello. I was diagnosed with PMR in late June, about 2 months ago. Your morning arm soreness sounds very familiar and the prednisone dosage similar. After 3 weeks the pain was significantly less for me and the blood test showed much lower inflammatory indicators. Sounds like each individual is different, but many common threads are covered well on this site. Take care.

[Kuipersr2 in reply to LabradorH]

Thank you so much for reaching out! What a great forum!

[Alebeau]

I went through the same morning stiffness in the beginning years until I started splitting the prednisone half in the morning and half at night. Was a marvelous discovery from this forum.

Worth a try

[Kuipersr2 in reply to Alebeau]

Thank you! Great advise. I will try it.

[singingloud]

Good morning from the USA. I’ve had PMR now for three years and I’ve been blessed to have been exposed to the wealth of knowledge on this forum. Even though we all have individual experiences, we have so many that are the same. I have experienced every side effect of the disease and medication over the past three years. It’s been comforting to know I’m not alone or mentally losing it.I do take a statin but only three days a week since my numbers are on the low side.

My best advice is to pace yourself with your activities. This is the hardest lesson to learn but so important. Go slowly down on your prednisone when it’s time to taper. In the beginning I was pushed to decrease too quickly and I would flare and have to start over again.

Ask any question to this fine group of people. We are here for you!

[Kuipersr2 in reply to singingloud]

Thank you for your excellent and informative advise/information. Support is so therapeutic. I get depressed thinking my body is attacking itself. Had COVID end of June. I believe there is correlation!

[PMRpro Ambassador in reply to Kuipersr2]

There is - but other illnesses can cause it too.