PMRGCAuk
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Recently diagnosed with PMR

I just turned 60. I was diagnosed with PMR on November 25, 2017. Spent two and half days in ER. They prescribed 25mg to be taking each day n to lower it 5 mg a month till I reach 7 1/2 mg. Currently I'm taking 15mg n will be lowering dosage to 10mg Feb 27th.

I don't have medical coverage and my family doctor refuses to provide me with another prescription. In short, I will be out of medication in about two weeks or less. He claims it's above his pay scale and that I need to see a Rumatologist. I can't afford the cost. I was told without insurance it will cost me $150 doctor visit n $1,000.00 blood work ect.

My question is what happens if suddenly I am forced to stop taking Predisone? Will I get GCA? What will happen to my body because of sudden discontinuation. My hands are at times in excruciating pain. Sometimes it's difficult to walk as well.

The only way I can continue getting Predisone is to be admitted to ER again. That's a very costly proposition. My last visit cost me $28,000.00 for a 2 1/2 day visit.

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What plan did they advise you to follow once at the 7.5mg dose? This is assuming that reducing from 15mg straight to 10mg on 27th February keeps your inflammation under control in the first place. It is generally recommended that the lower we get on the steroids, the smaller the reductions should be. Many people find that they can manage reducing from 15mg to 12.5mg far more successfully and there are some people who find they have to go even slower. We do hear from people who have been advised to go straight from 15mg to 10mg in one fell swoop but very often without success.

As to what will happen if you suddenly stop taking the medication, it isn't a given that you would succumb to GCA, but not only could you find yourself back at square one with the pain, there could be even more serious consequences.

I assume you are in the States. I'm not familiar with their healthcare system, but after reading your post am more than grateful for our NHS in the UK What a horrid predicament to be in. Perhaps others from your country will join in and be able to offer advice from their experience.

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Thank you so much for your reply. I'm in a horrible predicament. Wondering where n if I can get additional Predisone to continue my treatment. I was in so much pain back in November when it all started. My life has changed.

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Are you anywhere near Yuma, Arizona? Why? Just outside of Yuma is a little Mexican town - Los Anglodnes Thousands of Americans cross the border every day to get prescription drugs from Mexican pharmacies. (In Mexico, pharmacists can and do write prescriptions) . Drugs are very reasonable.

Hope this helps

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Some people buy a year's supply at one time

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Unfortunately Im in the Eastern coast section of our country.

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I have never had a rheumatology consult. my GP is handling my PMR. So far, so good.

Can you ask your GP?

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Where are you?

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I reread your response to my question. After reading your response I decided instead of reducing my Predisone from 10mg I would instead go to 12 1/2 mg.It seemed to work for about 3 days. Now I'm starting to notice two lumps bottom of my throat, puffinessential on both sides of my cheecks, slight numbness in my left large toe on my feet n swelling on my left hand pinky and more fat olong the waist within a short period of time e month.

I'm thinking it's the adverse reactions to Predisone, but not sure. My pain in just those few days of reduction from 15 mg to 12 1/2 is returning. Getting harder to walk and pain intensifing.

Because I hv no Insurance,Primary care physician refusing to refill my precription I wanted to reduce my dosage while searching for friends that may hv some spare Predisone.

I'm wondering if I need to return back to 15mg eventhough I'm having such adverse reaction to taking them.

I just thought I would share my story with you to get your thoughts.

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If you are beginning to gain weight/retain fluid then a simple remedy that has worked for many of us is to cut carbs in your diet drastically and reduce the amount of salt you use.

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This will be the hard part since I love Coca cola, salty things, n carbs. I know to discontinue them as much as possible is a must. Otherwise I will become a diabetic. Ugh...

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Thank you for your reply. I will do as suggested. Hopefully it works for me.

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Apart from the puffiness issue which PMRpro has already advised on, and which is a listed possible side effect of Prednisolone/Prednisone, it is possible that the other issues you mention may be related to something other than PMR/steroids, and to find out the answer, you will have to seek medical advice.

With regard to the puffiness, you will find that following a low carb diet as PMRpro has advised will help. Also, try and include plenty of diuretic-type foods in your diet, including asparagus, garlic, fennel and melon.

It’s good that increasing your dose proved helpful over a few days. Did you also rest during those days? If not, then you should start doing so now to help the increased dose to do its job of reducing the inflammation. We have to do our part and help ourselves, and it sounds as though you really need to tackle that diet in the first instance. The salt, for instance, will be causing you to retain fluids hence the puffiness.

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Just started reducing my salt intake n will try to reduce carbs as well to see as suggested that it wI'll help with elimination of puffiness in face n reduction in waist.

Thank you.

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If the ER cost you $28K - that would go a long way to your rheumatology consult.

You won't necessarily develop GCA just because of stopping pred - but the PMR symptoms will return. I'm appalled at your PCP's attitude - in the UK PMR is managed happily by GPs for the majority of patients.

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Thank you for your replay. I'm in the process of working out monthly payments with the hospital now. With limited income it's going to take me a longtime to pay. At the moment I can more concerned with how I can continue my treatment.

I appreciate your response.

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First of all, don't be all that worried about the bill. You can probably negotiate that down to a more reasonable charge for your stay if you haven't signed some kind of agreement. Even then, bankruptcy is an option. If Turmp can do it without being ashamed (4 times) so can you.

If you're in the USA, you need to go to your state's health insurance website to determine whether you need to buy into a health care plan or are eligible for Medicaid. This process can take some time, so don't delay getting started. Most states have some provision for people to help you navigate the system. You can also go to your state or local social services department to get this done. I'm actually surpirsed your hospital's social services department didn't get this started for you.

You may be able to get some help with blood tests from Planned Parenthood depending on the services offered by your local clinic. They won't likely have a rheumatologist on staff or in consultation, but they often do bloods routinely. They may be able to refer you to a doctor willing to help you until you get your insurance situation worked out.

Also try the Arthritis Foundation for help finding a low-cost clinic or doctor for treatment and tests.

Finally, after the rest is settled, I'd report that doctor to the state board for cutting you off from treatment. Suddenly stopping steroids can lead to an adrenal insufficiency crisis, which can be life threatening. Learn the symptoms and don't hesitate to head for the ER if you have symptoms - damn the cost.

I'm sorry you are in this situation, but there are things you can do to make the future better. But you have to take action. I know it's hard when you're already not feeling well, but not doing what has to be done is only gong to make things worse.

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Thank you for taking the time to respond. The hospital I stayed at has submitted paper work to the finance dept. in the hopes of coming up with a payment plan. They also submitted paper work to my state human services in the hopes of obtaining state insurance. The process is taking long. I'm afraid I won't recieve can answer b4 my medication runs out. I know it's going to be a very painful process going from having Predisone to none.

I will check other sources you mentioned as well.

Thank you

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In most states, your pharmacy can give you a 3-5 day emergency supply of prescribed medication unless it's a narcotic, which pred is not. Your GP may also prescribe a refill for a couple of weeks without requiring another examination or blood tests because that's fairly routine in the course of treatment of PMR.

An urgent care center is a lower cost alternative to the ER, but you can't wait until you're in extreme distress to see them.

Also talk to the hospital to see if a staff doctor would be willing to renew your prescription until your insurance is settled. Pred itlsef is pretty cheap - about $30 for a 30 day supply.

PMR is a long-term chronic condition. You're going to need treatent for quite some tme - 2 to 6 years. You've got to get this worked out for the long term.

Let us know how it goes.

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I'm trying to find a solution b4 my Predisone runs out. I'm deeply distressed n the thought of enduring the kind of pain I did before finally going to ER is in the for front of my mind. I know I need blood work n understand the importance of it. I just need to get by the next month or so until I cam come up with a solution.

Thank you

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My first thought was "Is there a free clinic in your area?"

Then I googled. The below site was my first hit and I'm not sure how accurate this information is as I'm not sure of the age of the article, but maybe there's something in it that would be of help to you.

Besides the return of pain, I wonder about the effect on the Adrenal Glands if you suddenly stopped. Aunties, has Jn4555 been on Pred long enough that this would be problematic?

healthcare-information-guid...

cssassociation.org/patient-...

I hope you can find an answer!!!!

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I tried our free clinic, but they told me there is only one Rumatologist available and a 9 month waiting period.

I'm still searchingfor other possibilities. I believe if I must stop medication all together I'm in for alot of pain. I have abut week n half left of medication left n hope I find an answer b4 I run out.

Thank you

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I have had PMRGCA for four years and my GP was just as effective as the rheumatologist. I am down to 4 mg of Prednisone and find that takes my aches and pains away so I can function. I got a CRP blood test and a Sed Rate blood test which can give your GP an idea of the severity of you inflammation.

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Can you talk to the free clinic and see they have an Internal Med or Family Practice doc that would see you? You could take with you one (or more) of the articles about how to treat PMR for a reference for the doc so that they could see what the protocol is. On the right hand side under Pinned Posts, find 'Websites'. There are several examples of how to treat PMR that you could print off.

Below is one.

I agree that an informed Int Med or Family Practice doc could treat you; however, I know my Int. Med doc couldn't pass me off to a 'specialist'/Rheumatologist fast enough. (Which was okay as I was her first GCA patient and she passed me off to a fabulous doctor that does understand GCA/PMR.)

Or you could get an appointment with a different IM or FP doc that will treat you. Shop around to find one that charges on a 'sliding fee scale'.

rcpe.ac.uk/journal/issue/jo...

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IM FP what does that stand for?

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Internal Medicine. Family Practice.

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It is difficult to say - though it is quite possible. The dose was very high for PMR and whoever prescribed it wasn't very au fait with PMR I would say - 15mg/day would have been far more usual and the amount of pred provided would then have lasted a lot longer.

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Thank you for your reply.I called our free clinic a couple month ago. There respose was the only doctor that can assist me is a Rumatologist who currently has a 9 month waiting period.

I going to call again today n see if they would make an exception n allow me to see a IF or FP.

Thank you

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Hi Jn4555,

I was diagnosed about 1 month later than you with PMR (I'm 64) after wrongly being treated for a while on antibiotics because my blood tests were not showing excessive inflammation. However once diagnosed and put on 20 mg of Prednisolone the dreadful pains virtually dissappeared within 2 days. Like you I was a told to reduce pred doses quite rapidly to get down to 7.5 mg which I did by mid Jan but started getting huge flair ups every few days. I went back and got more blood tests and my GP put me back th 15 mg and advised 1mg per month reductions until I get to 8 mg. I'm in a queue to see a rhumatologist. It will be interesting to see if you get returning pains when you drop rapidly not that I would wish that on anybody but as everyone on here is saying that is a high probability if you have PMR.

I'm so glad that we have state funded medical care in the UK and most of Europe. Steroids are not expensive drugs so I'm no massive drain on the state system and I wouldn't begrudge paying for them but not expensive doctors and hospitals.

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I have been thinking that instead of waiting till Feb 27th to reduce my dosage from 15mg to 10mg perhaps I should start tomorrow n just take 12 1/2 mg for the next 6 days then drop to 10mg.

My left pinky is swellon left hand hurts more then right side now. I have to try though because I don't have enough Predisone to carry me thru the next few weeks. I've asked around but n k one seems to hv extras to give. It seems it's easier to obtain Oxy codeine then it is Predisone. I'm using TraMaDol pain killer n it's the highest pain killer I'm willing to go.

I spoke with a Rumatologist today n because I hv no Insurance they want cash or credit card. They estimate this first visit will cost me $1,150.00. The follow up an additional $150.00 plus cost of consultation ect...

I have till April 11th to save up for tge visit. It's the earliest they can see me. I'm becoming depressed. Ugh...

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I live in the states I often get my prednisone without putting it in for insurance because they just dont get that although I have plenty of 10’mg - I still need 5 and 1’s so I can reduce. But point I am making is that prednisone is quite cheap in US. Paying for the doctor to prescribe the meds is a different story. Are you eligible for Medicaid? I am sure if you can get a prescription for prednisone - you would be able to afford it. Ask several places what they charge for the drug. Start with Walmart. I don’t think it will be more than 20 dollars a month without insurance.

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Nothing about this sounds quite right, particularly if you are anywhere in the US. There are some missing pieces.

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Exactly...pretty sure a visit to the ER would result in a new script..I know our health care system is bad but this isn't right...for one thing the first Dr needs to be reported if that's what he said and did,,,he knows you can't just run out of pred...and my Dr see's no good reason for me to rush to a rheumatologist..

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Not sure what you mean. My primary doctor refuses to prescribe anyore Predisone beyound this second prescription. He insist I must see a Rumatologist. I quote him " it's beyound my pay scale, ". I guess he is saying I need to see a specialist. Otherwise, go to ER n get help. Problem is ER cost n e $25,836.00 for 2 1/2 days stay of which I'm trying to work out with trying he finance dept. That fig doesn't include an additional $2,000.00 more of doctor bills. Any insurance coverage I try to obtain now doesn't covery pre existing conditions because open enrollment Obama care, ended Dec. 15th. Now Pre existing conditions will be coversed a year from now or until open enrollment begins again Nov 15th of this year. Subject to all change under current White House Administration.

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I assume your not a vet? A vets hospital would take you.

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No, military

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I've not heard of pain in the hands. Upper arms, shoukders and neck yes as well as girdle, hamstrings and back of knees.

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Oh, I have had it all along, some days worse than others.

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I have had hand and foot pain - the Leeds group did study and ofund it is quite common.

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Interesting PMRpro, did that occur after some time or from the onset? I've noted my pains are now affecting the back of my knees whereas I had no pain below my hamstrings initially. I've no noticeable pains in my forearms or hands or lower legs and feet yet. As I'm on Pred, pain is under control but is always there in background and first thing in the morning in particular. So I'm wondering if over time do the pains spread to the extremities of your limbs?

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Hands and feet was certainly pretty early on. First was being unable to put my arms above my shoulders. Then leaden legs and thigh claudication. Then the hands and feet I think - long time ago now. This was all long before pred.

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That's exactly the same as what I experienced but got to diagnosis and pred before spreading to limb extremities so maybe I should count myself fortunate. I know you have been suffering for years but I'm still early days. I'm now on a slow taper of 1 mg per month and yesterday came down to 14 mg. Earlier i tapered far to quickly and suffered bad flairs but gp had sense to reset me back to 15 mg. So glad I don't live in the USA with no insurance. Perhaps Trump will make America great again?? and introduce a state funded health service ..huh some hopes.

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His intitial aim was to get rid of universal health care...

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Well, now he's on to cutting Medicare and Medicaid, so we'll be seeing more and more posts like this from US PMR/GCA sufferers as they age out of ACA and into the elder care system.

The new health care plan seems to be "If you get sick, die quick."

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I think that is possibly the idea in the UK too...

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I know when I was first attacked with this tremendous pain I would not have been able to handle applying for Medicaid or even handle telephone calls. Forget about all the changes in Insurance right now, debts to hospitals, the long wait to see a rheumatologist and get to any older and more experience general practioner. No other pain killer will take this away. It may take a week or two before the pain stops but it should feel better every day on Prednisone. Get to a GP right away so you are not stressed about running out of meds. Your other md must be afraid of a law suit or he would be on the phone insisting that rheumatologist see you ASAP. He is doing nothing for you. The hospital will work with you later when you can help yourself. Stress is only going to hurt your more.

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Where do you live? If in USA then you have a problem depending on where. Are there still any free clinics in the states?

I live in Australia where we have health cover but we have access to free hospitals and private GP's who bulk bill in the Medicare system. If on welfare then scripts cost a minimal $6.50.

Your GP should be able to write a script to at least give you the chance to find the money to fill it.

Help me understand the system you're in and in which country. It sounds like America to me.

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I am in the USA. The process of State Assistance with Insurance is long.

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I agree with Insight329. You can't beat a paper trail ever. You have to be in their face to demand help diplomatically of course. Whilst it is a very difficult time for you to have to face all the scrutiny, it will be worth it in the end.

Not being on a list for a Rheumatologist now will only prolong the wait and add to your stress levels. You'll have to jump on the merry-go-round for a little while and you really will see results.

Someone at a clinic will realize you need help. They can't all be like that awful and totally ignorant doctor that refused you the help you needed. I mean, how difficult is it to see you need help for crying out loud? Report him if you can muster up the energy. Make sure he doesn't do it to anyone else.

Maybe you have a family member or a friend who could stand by you through this process. You know someone with a clear head when maybe yours will be cloudy. They'll be able to think on their feet for you and especially with any paperwork.

I really hope someone will see reason and do the right thing by you.

Good luck. You are in my prayers.

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Read back through everything that good_grief suggested as she gave you some really great suggestions:

1. Circle back to the hospital that you had services in. You said they filed paperwork for you for state funding. Check the status and explain that you need assistance in helping you obtain a prescription. I’d try to do that in person as it’s much harder to brush someone off when they are sitting in front if you.

2. Go to a Quick care or Urgent Care clinic. Take your bottle of Prednisone so that they can see the dose, take paperwork from the hospital showing your diagnosis, and write down all important information:, when you were diagnosed, dates in the hospital, what dose you are on now, name and phone number of current doc that has decided that he can’t treat you, date of your upcoming appointment with Rheumatoligist (if you made one) and copies of the two articles I posted for you earlier on how to treat and adrenals. Stress that you are afraid to abruptly stop taking due to your adrenal glands. I wouldnt mention bloodwork. Lots of people don’t have their bloodwork checked on a regular basis. I’d just stress that your current doctor said he won’t treat you any longer and you can’t afford an appt with a rheumatoligist and cant get to see one in free clinic for 9 months. And then just beg for help.

3 call the free clinic and make an appt with the rheumatologist. I don’t care if its nine months - get your name on their books. If you don’t in 9 months you’ll be mad you didn’t. And if in nine months you dont need the appt you can cancel it. But dont cancel it prematurely.

4. Head to ER if health declines. Dont wait until they have to admit you.

Let us know how you get this resolved.

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Thank you for replying. I find your suggestions extremely helpful. Actually, you have giving me hope at a time I was really down. I'm going to request for my medical records from my stay in ER as you have suggested. I will take the paperwork with me to a local clinic in the hopes of being able to get additional Prednisone.

Also, I will call today and get my name on the waiting list.

I appreciate you taking the time and writing back.

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I don't know if you'd need all of your medical records. That could be quite extensive and they could charge you per page. I think your Discharge Summary would be enough.

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Good Morning! I'm up this morning early because of the pain I am. Just 4 days ago I switched from 15mg to 12 1/2mg. I wanted to reduce to 10mg but I don't have alot of Predisone left & my doctor as I previously mention won't prescibe anymore. Rumatologist would cost me $1,300 for first visit since I hv no Insurance

This past week I'm noticing two small lumps on my lower portion of my throat next to eachother. Also, noticing more pain in all my joints, arms legs, and swelling in my hands n cheeks.

Im thinking this is all coming from reaction to the Predisone. I'm told it's the ONLY medication that helps PMR. I'm in a horrible situation n just want to give up. I'm pretty depressed at this point. Thinking maybe only a matter of days that I return to ER n it's very high cost.

I'm very interested in your response since you where so very helpful when I posted my condition n questions b4. I found them very helpful.

What are your thoughts?

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I’m so sorry that you are feeling worse. But we knew that was going to be the outcome, eventually - especially if you stop taking Pred cold turkey.

I’m not medically trained so can’t ‘treat you’. No idea on the lumps. Regarding pains in joints I suspect you’ve gone below the dosage you should be at or it’s Pred withdrawal.

If me, I’d go to an Urgent Care Clinic (or whatever they are called in your area). I think that would be a lot less expensive than the ER. Most are open 7 days a week. I would go today.

Best wishes on getting the help you need.

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Also, remember that an ER bill where you can be treated and walk out the same day is a whole lot less expensive than one where you have to be admitted. Be wise in your timing.

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Thank you for your reply.

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Hi! It's been sometime since I have this site again. Since that time, things really haven't changed much with the exception that Human Services in my state covered the $28k cost of initial ER 2 1/2 day stay Nov 24th thru midday Nov. 26th.

Unfortunately once all was covered my case was closed. I had to reapply for which they told me it would take three days to find out if any further coverage would be accepted. That was a week ago n still no answer dispute leaving messages.

I have been collecting Prednisone from various people. Mostly those that hv pets who where prescribed Prednisone & have since past away. I now hv enough for the next two weeks, with a mixture of 4mg, 5mg & ten mg pills.

I have reduced my Prednisone intake from 25mg, in Dec to 20mg in Feb. then 15mg mid month to now 12 1/2 mg. As a result of lower dosage my figures are swollen, mostly my pinkies. I have had no blood work done since leaving the hospital because of cost envovled as previously mentioned.

For a short time I increased my dosage to 15mg then a couple weeks later back to 12 1/2 mg where I am at now. I want to reduce further to 10mg but I'm still in pain.

Uncertain where to go from here other then perhaps a change in food diet. I've been quite sadden by this all.

I know blood work is long overdue, but not affordable. Perhaps next step is to sit in Human Services to see if they will talk to me further.

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Jn4555, I’ve wondered about how you are and if you’d gotten some answers. First, that’s great that you are out from under the 28k debt. Did you sign up for an appointment for the free clinic at the time of your post 2 months ago? If so, its getting closer. Great job on having a 2 week supply at this time and how you’ve been able to taper down. I probably would stick where you’re at and not go further as it sounds like you might already be too low if you have pain. And i agree that a face to face visit with Human Services might be needed. I’m sorry that they don’t seem to understand when they say we’ll have an answerin 3 days, an answer is expected in 3 days. Hopefully you get an answer soon - and one that will give you healthcare coverage.

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I found out that yesterday that the clinic is not actually free at all. They have one rheumatologist available n while I placed my name on the list I'm not sure if by the time they can attend to me I will have sufficient funds.

I was going to drop down to 10 mg today, perhaps I better heed your suggestion n stay at 12 1/2 mg as little longer or perhaps drop to 12mg instead.

On Monday I plan to go to Human Services n see what exactly is going on. In the meantime I'm excited because I managed to obtain 10 more 10mg pills of Prednisone today. They are tightly outdated but grateful for them.

Thank you for your previous n current suggestions. Believe me when I say they have been extremely helpful in this time of need. I'm a grown 60 year old man who resides alone, but there are days where tears run down my face n I become scared that my conditions may worsen.

On a side thought, I have been experiencing bouts of dizziness that last about 15 seconds on occasions. Not sure of its cause but hoping it's not part of the side affect from Prednisone. This morning I am having sore throat issues. Just concerned because of lower immune issues. Perhaps I am overacting.

Again thank you for responding. I appreciate it immensely.

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I was in Mexico last month got 20mg tablets 100 count for under $25.

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I agree this Dr is not serving you as they should. Ask again in writing why he will not agree to a refill until you can get into the Rheumatologist. Then take the Dr's reply to The hospitals chief is staff and ask if this is proper protocol? Be calm dress clean don't clutter the discussion with a bunch of non essential details focus on the refill and continued refills until the date of the specialist ask for any responses in written format

The hospital will get it that you are starting a paper trail Hopefully this will get them to do the right thing.

After they hopefully do the right thing report the first Dr to the state board.

I am new to this support group but if you are close to CT email me. Good luck

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Thank you for your response. Insight329 Give me some great ideas. If I am still unable to get Prednisone I will do as you have suggested.

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I know it's hard, but you have to stop waiting and make things happen for yourself.

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Jn4555, we are all worried for you and pulling for you. Now as my best friend would say, "Pull up your big-girl panties and get to work". You can do this, but like GOOD-GRIEF said, it's going to take effort and you're going to have to be persistent.

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