Ambivalent

[Usauna]

Greetings everyone!

I'm new here!

I'm really grateful to have discovered this forum. 2 days ago, I was diagnosed with PMR. for months I've had these "symptoms". They have slowly, (over a years time) spread from the middle of my arms to my shoulders, knees, and I feel tingling in my toes. It feels like the constant body aching of having the flu, along WITH a lactic acid burn that comes after a strenuous workout.

I have tried to push it out of my mind, and think, "It will go away"

But it didn't-it got worse, so I went to the Dr.

Now that I have a diagnosis. I am not in mystery, playing Dr. Google and trying to figure out what I have; however, now that I know, and am seeing the course of medication, and the possibility of GCA, I am not sure HOW I feel. Glad that I now know, WHAT the issue is, but indifferent to the problem itself, as well, as fearful of the GCA that looms in the darkness....

I'm terrified of steroids, and weight gain. I literally cannot function when I am over weight, and I go into deep depression, and I surround my world with apathy that centers on self sabotage. It's a vicious cycle, and I don't wanna go there, AND battle a head full of hornets.

I ask myself: "Whats worse, a camel hump, a moon face, a bloated gut, misguided fat all over my body, and rage feelings, or some dysfunctional muscles, stiffness, and pain?

I'm thinking about all the side affects, and the dreadful course and length of it all, and I ask myself, "Whats worse"?

At least now, I am happy, thin, and free of depression. Is this a poor trade off? I might be free of some joint and muscle pain, but might I be 10 times MORE miserable emotionally, mentally AND physically?

I'm new to this site, and new to this diagnosis. I'm 60 years old, and I have been an athlete all of my life, as well as a happy, upbeat, and gentle spirit...

Can I get some experience, strength and hope? What are some nutritional suggestions to stave off weight gain, and other side effect?

I'm not on prednisone yet, but I'm sure he's gonna prescribe it when the bloodworm comes in...I'm enjoying these last few days of being free and happy...

Thank you in advance!

Usauna~~

[1602]

Hi there - sorry to read your post and we all know how you feel. I appreciate all you're saying but you need to realise that PMR/GCA are extremely debilitating and you need to find out as much as possible about the condition. This forum is an excellent place to begin and I'm sure that wiser heads than mine will offer more practical advice. I must ask you though - is it worth losing some/all of your sight? Nothing is certain but I personally have bad sight damage which occurred after I had been diagnosed and started on Pred. Please take care xx

[Usauna in reply to 1602]

Thank you for your response! I was curious...did the sight problem occur AFTER you started treatment, or was it something that happened because you resisted TX? Curious: Are we just sitting ducks for GCA, REGARDLESS of treatment, or is the treatment a proactive, preventive measure towards NOT having sight issues?

[DorsetLady PMRGCAuk volunteer in reply to Usauna]

No, you're not a sitting duck for GCA. Some get PMR, some get GCA, or some get both. However, there is a thought that if you don't take enough Pred to control your PMR, it can lead to GCA - but it's not a given. Luck of the draw I guess!

PMR mainly affects the blood vessels in your major muscle groupings - shoulders, hips, pelvis and knees. GCA affects your blood vessels in shoulders, neck, head and/or torso.

There's a lot of discussion about whether they are separate illnesses, or two sides of the same coins. What they do have in common is that they are auto immune illnesses - but there are lots of those about!

[1602 in reply to Usauna]

Hi there - bit complicated I now know that I developed many symptoms of PMR yeover a period of 8/9 months before being diagnosed. However, I think now that I also might have had GCA symptoms developing as well, as I had shoulder/neck problems. I had then, what I thought was a minor glitch in my left eye and went to the optician - who immediately did an emergency referral to the eye consultant. It was he who diagnosed me with PMR/GCA aftterr a range of tests over 2 days. He started me on 80mg Pred for 4 days, then carried out a biopsy which confirmed GCA. After another 3days of 60mg Pred = damage struck overnight. I lost a lot of the sight in my right eye - which up to then had not been previously affected - and more damage to the left. My consultants were devastated. It's the way it goes. As I present atypically it doesn't help matters. Butt as DL says having one doesn't mean you'll get both. I've learned to take one day at a time otherwise I'd go mad. Good Luck xx

[Mary63]

Welcome! Try not to worry too much about all the side effects of steroids. They don't happen to everyone. I have gained weight but only a stone in a year, and that has been slowly going down over the last 3 months with a nearly no carb diet...which seems from all the evidence advice here to be the best way.

i too have always been sporty. I still do the gym once a week and tennis twice, albeit on days when I pace myself the rest of the time...but I feel better for it.

You will need to see how you feel when you are taking prednisolone, but if it is anything like the boost I had, i would far rather be on steroids and pain free than any other option. Weight is important to me too, but there are definitely ways [low carb] of dealing with that, and I suggest you follow that kind of eating from day one, rather than hoping for the best and finding you put on a bit of weight.

others will be along soon...

[DorsetLady PMRGCAuk volunteer]

Hi Usauna,

I know it's very difficult to come to terms with a long term condition such as PMR, but it is treatable, and although Pred can have some nasty side effects, doesn't mean you're going to get all, or even some of them!

As we often say, Pred is double-headed, it gives with one hand and takes with the other. Depending on personal experience to some it is a giver back to a near normal life - those that have been virtually bed ridden prior to diagnosis, to others with GCA it's saved sight, so perhaps we are a bit more grateful to it. For some, the side effects do cause a problem, but the same can be said for other drugs, and I guess if your symptoms weren't too bad pre diagnosis you do wonder whether it's worth taking the Pred.

Unfortunately at the moment it is the only drug that controls the inflammation (leading to pain, stiffness) caused by PMR or GCA. So it's Hobson choice really!

You don't have to put on weight, control your refined carbs etc, and you still can exercise, just more gently than before.

Life doesn't end with PMR nor Pred - it just becomes a little less frenetic, and you have to plan things a bit more. Live life in the slow lane for a while - you might find it's not too bad after all!

Good luck.

[Usauna in reply to DorsetLady]

Thank you D.L.! I appreciate your response and I will l take that into consideration, diet, carbs, ect

[PMRpro Ambassador]

I can't quite equate your statement of "free and happy" with "symptoms of PMR" - because the 5 years I had the symptoms without pred I certainly wasn't "free and happy" and eventually I was depressed. I also put on weight BECAUSE I couldn't exercise as I was used to. I couldn't move easily, was in constant pain and, at one point, housebound. I crawled upstairs on hands and knees and stomped down one step at a time like a toddler. If you have PMR for long enough you will almost certainly discover that many of the claimed side effects of pred also raise their heads due to unmanaged chronic illness.

This is the "reading list" on another PMRGCA forum

patient.info/forums/discuss...

and if you visit that forum itself you will meet several people from all over the world who were athletic before PMR and who have been able to continue exercising through PMR, not always at the same intensity but doing a lot more than most of us can even dream of.

There are over 80 listed side effects of pred - some people get some, some people get next to none and no-one gets them all. Some people lose weight and many of us have avoided weight gain or lost pred-associated weight gain by cutting carbs drastically to get our bodies into ketogenic metabolism which uses up the fat. It also helps reduce the risk of steroid-induced diabetes, fluid retention and other things. Until you get there you won't know which class you are in.

As for the length of it - I've had PMR for 13 years, 5 without pred, the rest with. The 5 years without were bad enough, if you are one of the unlucky 25% where PMR lasts more than 6 years, it is a long time to be in pain, believe me. On the other hand, 25% are off pred in about 2 years or so, another 50% take up to 4 to 6 years. But you cannot know in advance which you are.

And SHOULD your PMR progress to GCA, which it probably does for about 1 in 6 at some point, then you have a very stark choice: you take pred at a high dose or you risk going blind. Again, until it happens, you don't know if you are in that class either.

As my husband said when told his chemotherapy would probably leave him deaf - "Deaf or dead - there isn't a contest is there? Neither, I'd say, is fat or blind.

[SnazzyD]

Hi, I just love that badge! Got to get one. Don't think we can in U.K.

10 days ago I was thrown into this new life with a sudden headache and my eyes failing over night. No muscle problems or real pain, just tired with a bit of a stiff neck for a few weeks but nothing to speak of. I was put on Pred straight away and my sight came back so no need to be convinced there! Having been lean and athletic all my life, I too am worried. There is much info on this forum to help pick your way through the maze. Now where's that paddle?

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

So do I! Been there many times!

[piglette]

Dear Usauna, I can understand your worry about steroids, I think most of us were worried. However I was in so much pain and so incapacitated I could not wait to take them and a miracle happened within hours. If you take them and they do not work you can just stop them if you have only been on them for a week or two and that should not allow any possible side effects to start working. Personally my life would not be worth living without pred. You do not seem to be in that much pain from what you say, perhaps you do not have PMR.

[Usauna in reply to piglette]

I have pain and lots of stiffness, but maybe it's not as bad as it COULD get?

I will know more when the blood work gets back, and if Dr says go on PREDNISONE, I will...

😎😎

[piglette in reply to Usauna]

As I said you can always stop if the pred does not work. It normally works pretty quickly, in my case fifteen hours and I was not the quickest! One thing in twenty per cent of people with PMR the blood tests do not show raised inflammation levels, which can be a problem as the doctors sometimes do not believe you have PMR because of this.

[kulina]

Don't worry about the side effects yet, nor about GCA. You need to lower your inflammation and do away with the pain. You might never get GCA so why worry about it now? You have some control over the side effects and you might get some but not others. Change your diet do away with sugar, salt, carbohydrates, coffee and anything processed and since Pred gives you the munchies, watch your portions. Eat as healthy as possible. Also, exercise as much and as often as your body allows, but listen to your body, don't push it. This worked for me, I hope it works for you too.

[Amstel]

If it's of any help or reassurance, I've been on pred since last August starting at 15mg now down to 10 and starting a slow reduction to 9. I'm just coming up to 63 and play drums in a rock band, something I've done for 50 years. I also bomb around on a big Harley Davidson trike in my spare time. Without the pred this would all be now impossible. As far as side effects go I have seen no real increase in weight apart from a slight enlargement of my already chubby jowls. How much of this is due to steroids or inherited from my dad I'm not entirely sure!! I have no signs of depression and also have not really had to change my eating or drinking habits. When reducing the dose I do get a strange feeling in my shoulders and limbs but this is nothing like the pain from PMR so I assume it's withdrawal symptoms and it usually subsides after a few days. I suppose what I'm saying is that it needn't necessarily mean a total change of life being on pred. I certainly intend to carry on doing what I do. I realise everyone is different but I thought I'd just share my experience in the hope it might offer some encouragement.

[Usauna in reply to Amstel]

Ahhh, thank you! I LOVE riding too

[BonnyQuine]

Hello

I have GCA,

From what I can see, the chances of getting debilitating side effects, from the sorts of Pred doses you'll get for PMR, are a good deal less.

If you do get GCA, the side effects from the much higher doses, for much longer, that you have to take then are likely to be much worse. Likely worth avoiding going blind for, though.

But what are your own chances of getting GCA? Not so high. So you'll probably be fine - eventually if not immediately.

So, chin up, shoulders back, paddle at the ready . . . .

Best of luck.

[Bonnig]

I'm still coming to terms with my PMR diagnosis...came on this past October.

I have side effects I don't like on pred..and continue to get very scared when I read about other side effects on this site that I don't currently have, yet I literally can't function without it.

Regarding weight, I have lost seven lbs over just the last several weeks by changing my diet...and following an anti inflammatory diet as much as possible. When I first started pred, I did blow up and gained weight but I've turned that around. My face is fuller but I no longer have the chipmuck, moon face.

[Hidden]

Hi, I am 78 and have been on steroids since January 2016 and during that time I have lost 3 stone 5 lbs, so with care you do not need to put on weight whilst on steroids. I wont say it has been easy, but following a recommended (Slimming World) diet I have managed to loose the weight without too much trouble. PMR seems to run in my family as 2 of my brothers have it and also my mother had GCA and lost the sight in one eye.