PMR health: HELP!! no relief after 6th day on 20mg. - PMRGCAuk

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47 Replies

HELP!! no relief after 6th day on 20mg.

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pomeranion
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47 Replies
SheffieldJane profile image
SheffieldJane

Little dog has the right idea. Help it along by resting a lot and avoiding stressful situations. It can take a couple of weeks in some folks. Assuming that your diagnosis is correct and your dose is high enough for your requirements ie somewhere between 12.5 and 25 mgs. 20 mgs was perfect for me and I stayed there for about 6 weeks.

pomeranion profile image
pomeranion in reply toSheffieldJane

THANK YOU FOR THE COMMENT ABOUT MY ANDY(DOG) YOU SEEM VERY NICE AND KNOWLEDGABLE. LOOK FORWARD TO CONTINUEING ON THIS SITE. I JUST CAN'T STOP CAPS. ANY SUGGESTIONS.

SheffieldJane profile image
SheffieldJane in reply topomeranion

Just press the caps lock again, that frees mine on the iPad. I thought you were shouting 😂😂😂Andy is very cute!

pomeranion profile image
pomeranion in reply toSheffieldJane

Please see my new post. Loved the emoji's.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

For some it takes longer than for others....and if you are expecting an instant cure unfortunately it doesn't always work like that.

As S/Jane says, follow the dog's example, and rest!

pomeranion profile image
pomeranion in reply toDorsetLady

I'll try to rest more. Thank you for the concern.

jinasc profile image
jinasc

When you say 'no relief' after 6 days............do you mean all your pain is exactly as it was before you took your pred.

Whilst we are all human, we are all individually different so that means that for the majority of people diagnosed with PMR 15mg-20mg normally works.

Quite a while ago, statistics where explained to me........ie they come in a Bell Curve and the middle of the Curve is where they use. Some of us fall down either side out of the 'normal' range.

I would be calling my GP.

pomeranion profile image
pomeranion in reply tojinasc

I HAVE CALLED MY DR. AND SHE HAS UPPED ME TO 30MGS. WILL SPEAK TO HER AGAIN ON MONDAY. THANK YOU. CAN'T GET RID OF MY CAPS. ANY SUGGESTIONS.

pomeranion profile image
pomeranion in reply tojinasc

Please see my new post.

PMRpro profile image
PMRproAmbassador

It sometimes takes longer or a bit more pred - be patient. Is there nor difference at all? And you ARE resting and not trying to do "normal" housework and so on?

pomeranion profile image
pomeranion in reply toPMRpro

Please see my new post. I need all the help I can get. Thank you.

Charlie1boy profile image
Charlie1boy

I was increased from 20mg to 30mg after three days of very little relief at 20mg.As others have said, we all react differently, both in terms of the starting dose and the time it takes to take effect. I stayed at 30mg for thee weeks before tapering.

If you have any misgivings then I would speak again with your GP.

Good luck

Paddy

pomeranion profile image
pomeranion in reply toCharlie1boy

THANK YOU I SPOKE TO MY DR. SHE INCREASED TO 30MGS . WILL SPEAK TO HER IN 5 DAYS AS SHE SUGGESTED. I THINK I HAVE HAD SOME IMPROVEMENT WITH THE PAIN BUT MY SHOULDERS (BOTH FRACTURED) ARE STILL A CONCERN. I CAN'T RAISE MY ARMS AND REACH BEHIND AND COMB MY HAIR. I AM VERY IMPATIENT. MY PINS AND NEEDLES AND BURNING IN MY SHOULDERS AND ARMS REALLY BOTHER ME. ANOTHER QUESTION HOW DO I TURN MY CAPS OFF?

HeronNS profile image
HeronNS in reply topomeranion

Are you on a phone? Usually you can find a settings option.

Google instructions for your device, ask the question directly: "How do I turn off the caps on my .........?"

Or ask a teenager.

pomeranion profile image
pomeranion in reply toHeronNS

Thank you for your response. As you can see I have solved the caps problem. If only my PMR was that easy to solve. Looking forward to all communications with all of you. I feel so lucky to have found this site. Keep up the good work.

HeronNS profile image
HeronNS in reply topomeranion

I remember the day I was on a Zoom meeting and couldn't get my camera to work. During our break I googled the problem - and it turned out I'd inadvertently pressed a handy key on the keyboard, one of the mysterious F keys, it even has a picture of a camera on it! I agree, if PMR were so easy to solve, but like so many of the quirks of our computers, the solution remains hidden, probably in plain sight!

pomeranion profile image
pomeranion in reply toHeronNS

Please see my new post.

pomeranion profile image
pomeranion in reply toCharlie1boy

Please see my new post.

Bcol profile image
Bcol

Good morning. Sorry to hear of your problems, but you have come to the right place for advice. OK let's try and sort out Caps. Are you using a phone, tab, laptop or desktop?

pomeranion profile image
pomeranion in reply toBcol

I have to get used to the time difference. It is 9:00PM. here. I am in the United States. I am looking forward to further discussions. I am so happy and lucky to have found this site. As you can see I solved the caps situation. I'm working on my laptop, still discovering it's wonders.Thank you for your response. Hope to speak to you soon.

Bcol profile image
Bcol in reply topomeranion

It's just after 03:00 over here in UK, we'll done for finding the caps solution. You will find that there are many of us on line at all sorts of time, the community covers many parts of the world's time zones as well as those of us who are just up and about to take tablets or have modified sleep patterns due to their ailments. Take care and stay safe.

pomeranion profile image
pomeranion in reply toBcol

See my new post. Please.

pomeranion profile image
pomeranion

BAD BAD DAY. I am really in bad shape today. Pain and achy all over, now in my hips as well as my shoulders and arms. Stiffness not going away. Feverish and pins, needles and burning terrible. Malaise and depression. Can this be all PMR? Took ibuprophen along with 30mgs. pred. with no relief. I took the pred. at 1:00AM and slept very well about 6hrs. That is really good for me. I took some of the suggestions about the night dosage versus the morning. I don't know if that is why I'm having such a bad day. I will be on the 30mgs. for another 3 days and then talking to my Dr. If anyone has any comments or suggestions they would be much appreciated. Looking forward to better days and continued conversations with you all. I don't feel quite as alone. My son just called to check in with me but he doesn't understand and I hate complaining. Thanks again.

HeronNS profile image
HeronNS in reply topomeranion

When you want to start a new topic, as you did here, please just make a new post altogether. This comment may not be seen by people who didn't respond to your initial post.

Please be very careful taking any painkillers with prednisone, especially when you are at a moderate rather than very low dose. You need to protect your stomach. Always have pred with food (ibuprofen too for that matter, but hopefully not at the same time as you are taking pred). Best not to lie down right after taking these meds either. Give them time to pass through your stomach. If I have to take something in the evening for a headache I always sit up in bed.

As for the other symptoms, sounds like you might be coming down with a cold or flu.

I don't think telling your son, who, bless his heart, cares enough to check in on you, that you feel really awful is complaining.

The feverishness at least should be mentioned to him.

Stay hydrated.

If you get worse, time to call the doctor.

pomeranion profile image
pomeranion in reply toHeronNS

Thank you for the fast reply. I have a question concerning the onset of my symptoms. You seem very knowledgeable. I've read and heard about a possible virus cause for PMR.My son had covid symptoms for about a month after he took me to my Drs. office. I had some shortness of breath for a few days but no other covid related symptoms. I just wonder if that short exposure could have prompted my PMR. I didn't see my son for that whole month while he was sick. What are your thoughts?

HeronNS profile image
HeronNS in reply topomeranion

Paracetemol=Tylenol (acetaminophen). It's easier on the stomach but never take more than the recommended-on the-bottle dose. If you have absorption problems there is, I believe, an injectable form of pred.

pomeranion profile image
pomeranion in reply toHeronNS

Interesting idea. I'll mention it to my Dr. Thank you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topomeranion

Agree with HeronNS, sounds as if more than PMR is going on - and no ibruprofen- paracetamol (or equivalent in US) should take down the feverishness- and plenty of liquids.

pomeranion profile image
pomeranion in reply toDorsetLady

Thank you, very helpful. Although today I feel somewhat better. Not feverish but arms still achy and my range of motion is still so impaired. Is this normal not to be able to raise my arms hardly at all? I don't know if I have mentioned but both my shoulders are fractured but I haven't had this much disability before. Showering and dressing are miserable. I was tested for Covid after I had the breathing concerns and it was negative. After that I had a parathyroid adenoma removal surgery. I thought the shoulder and bone pain was a symptom of my underlying symptoms of my hypercalcemia and the hyperparathyroidism. But the pain increased immediately after the surgery even though my calcium levels and parathyroid levels dropped. Drs. believe surgery was a success. A 1gram adenoma on my right parathyroid gland was removed.

My sister had PMR and just had surgery for ankle ligament injury. They think it was a complication of her steroid use. She is on the mend but still experiencing a lot of arthritis pain. She is being tested to determine what kind of arthritis it might be. Plus, she now is concerned about double and blurry vision. She was always so proud of her 20/20 vision.

Anyway, I'm getting sidetracked. She is the one that told me about PMR when I started feeling really bad. I had never heard of it before. I started to research and made my appointment with my rheumatologist. He put me on the steroids but when I told him I didn't have hardly any relief he said I should see my orthopedic surgeon. Just blew me off. My Ob/Gyn got my surgery results and called me to see how I was doing. I

told her about my ongoing pain and my suspicions about PMR. She was very concerned and upped the steroids from 20mgs. to 30. I will be speaking to her in 3 days. I hope there will be improvement. I'm sorry for going on for so long but it feels good to unload.

How did this come on so fast? I'm really baffled and so unhappy right now. Thank you for listening.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topomeranion

Shoulder/arm pain is very common with both PMR and GCA, but hopefully the higher dose will sort that out. However as you have other issues with shoulders, it may well be a combination of both...and of course you could be like you sister and have arthritis as well!

Please give it a few more days and see if it improves....and honestly worrying about where it came from it pointless. We all do initially, and usually it’s some sort of stress, whether that be mental or physical or both.

It’s here now, so just take each day as it comes, it will get better once the medication is working properly - please believe that. There is nothing you could have done to stop it, it’s not your fault, it’s just one if those things.....the sooner you accept that the easier it will become. 🌸

pomeranion profile image
pomeranion in reply toDorsetLady

Thank you for the reply. I do have rheumatoid arthritis (disfigured fingers). My rheumatologist diagnosed me about 2 years ago. I was put on methotrexate and improved. But the hair loss was a bother so I discontinued. I was doing OK and then diagnosed with MGUS probably due to the methotrexate. Still researching this. I need to see my neurologist in 6 months. MGUS affects blood and bone marrow. No real symptoms with MGUS, diagnosed from blood test for peripheral neuropathy.

Because of my hypothyroidism I just started seeing a new endocrinologist. He started testing for Cushing syndrome. I have had all signs and symptoms for years. First time addressed except for earlier PCOS. That is one of the reasons I had gastric bypass surgery to lose weight to improve fertility. Six months after surgery I lost 90 pounds and got pregnant the next year. Have 2 wonderful sons. Never regretted a day with the procedure except now being informed about malabsorption. Probably a reason for my health problems. We are what we eat. The Dr. now has informed me that he will delay further testing because of being prescribed prednisone. I also have osteoporosis (just diagnosed) because of the parathyroid adenoma. I'M JUST A MESS. I'm currently in a holding pattern. Hope PMR will improve and be able to address the other concerns.

Till then, I am very happy to have found such a wonderful resource like this. It has given me peace of mind with such wonderful comments from all of you. I hope you realize how helpful this site is. I wish I could find a Dr. that was as resourceful.

Have a great day. Thank you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topomeranion

🌸

PMRpro profile image
PMRproAmbassador in reply topomeranion

If you have had gastric-bypass surgery, it is possible you won't absorb the pred if you get it as plain tablets - just a thought.

pomeranion profile image
pomeranion in reply toPMRpro

Good thought. I will try to explore.

PMRpro profile image
PMRproAmbassador in reply topomeranion

I know there was one lady who needed liquid pred to absorb enough.

pomeranion profile image
pomeranion in reply toPMRpro

Very interesting. Thank you.

PMRpro profile image
PMRproAmbassador in reply topomeranion

As DL says - it really isn't worth expending energy on wondering where it came from. Not even the experts know what causes it or any other autoimmune disorder, other than it is almost certainly due to a deranged immune system and there are myriad causes of that which all chuck a missile at the immune system - and eventually one knocks it over. Concentrate on you and finding the management that works best for YOU - because it may not be the same as someone else. Take control of the things you can - diet, exercise and rest in the right proportions. Try to avoid stress - easier said than done I know but let someone else take the strain for a change.

pomeranion profile image
pomeranion in reply toPMRpro

Thank you. I have implemented a low/carb, high fat diet and have already lost over 7 pounds. That has helped. Any additional diet and health tips are appreciated. Talking to my Dr. tomorrow. I have experienced some improvement. Not as much pain and stiffness. Fever subsided. Will keep you posted. Thank you.

PMRpro profile image
PMRproAmbassador in reply topomeranion

There are a few possibilities: your PMR is progressing to GCA and the dose you are on is not enough to manage the inflammation; you have picked up an ordinary infection of some sort which is making your PMR feel worse; you have Covid; you have something else.

You really do need to speak to a doctor as soon as possible. Self management with ibuprofen when you are on 30mg is not a good idea without advice.

It was suggested in the past that a virus causes PMR - no common viral or bacterial infection was found in all the patients they looked at. What is more likely is that an infection of some sort is the final insult to the immune system and is the straw that breaks the camel's back, sending the immune system haywire.

pomeranion profile image
pomeranion in reply toPMRpro

Very interesting. Thank you.

jinasc profile image
jinasc

Have you been tested for Covid, if not I would suggest asap.

pomeranion profile image
pomeranion in reply tojinasc

Thank you for the suggestion. Also the advice about taking time when consuming any medication. I never thought about it. I had gastric bypass 40 years ago. My endocrinologist suspects I may have an absorption concern. Will continue to explore.

Very helpful.

pomeranion profile image
pomeranion in reply tojinasc

Yes, . I was tested for covid. Test was negative. Low grade fever transient. Better today. Stiffness better also. Shoulder and arm pain still bad.

I'm hopeful I might see improvement. I will talk to my Dr. in three days. Thank you.

Bcol profile image
Bcol

Morning Pomeranion. I can't really add anything to the suggestions that have already been made. I think a test for Covid would be sensible given the symptoms and whether it comes back positive or negative it's a possibilities box ticked. Does the Pred have any effect on the symptoms? If yes then you may need to be very patient, rest and give the Pred time to work. until you see the doc in a few days, If not and if the Covid test has come back negative then it may be the flu or a really bad cold in which case bed, rest, paracetamol and patience. If you get worse then time to call doctors. Keep your Son informed, its not complaining. Take care about how and when you have your medication. Hope you feel better soon.

pomeranion profile image
pomeranion in reply toBcol

I will implement your suggestions. Very helpful. Thank you.

Charlie1boy profile image
Charlie1boy

Hi,I agree with Bcol and others. Seems maybe something else might be going on.

Good luck, and hope things get better for you soon.

Paddy

pomeranion profile image
pomeranion in reply toCharlie1boy

Thank you.

I'll try to be optimistic.

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