New to this forum : Good evening all, I’m a true... - PMRGCAuk

PMRGCAuk

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Dee02 profile image

Good evening all, I’m a true newby!

After 18 months of back and to, to the GP with shoulder pain, worsening depression and feeling lethargic I was made to feel that it was all in my head. I started to get a terrible headache and went for a private eye test. The optician was amazing and wrote a letter to my GP straight away. Finally I had blood tests and was diagnosed with GCA and PMR. I have a few other conditions, including only having one kidney and pre-diabetes. My GP started me on 30mg Pred, and put the fear of god into me.

He reduced the dose quickly to 20mg and the headaches started back, so I’m now back on 25mg, and having slight headaches, and pain through my eye.

I’ve put weight on, although I’ve been careful with what I eat, my face and neck are huge, but they worst is the fatigue. I can barley shower, and I am off work. Also my Vitamin B12 levels have dropped to 185, so I guess that’s not helping either.

I have now become diabetic and also taking Metformin which the side effects are fatigue!

I guess the worst has been no support or information, here are the meds off you go.

I am on the waiting list to see an endocrinologist, but no other referrals made, no offer of support and I just feel like I’m sinking.

The other thing that is bothering me, is I am getting kidney pain, I don’t know if that is normal with pred?

Sorry for the long post, I guess it’s quite cathartic to be able to let it all out, as the last 3 / 4 months I’ve had “come on, pull yourself together, sitting in the house isn’t helping”

20 Replies

I'm so sorry you are feeling so bad. I do have to say that a starting dose of 30 mg pred is extremely low for GCA, usually the very lowest dose gven for GCA is 40 and people often need more. If your GP is scared of pred he should be much more scared of the possible side effect of GCA which is blindness.

The best way to control elevated blood sugar when on pred is to severely restrict carbs.

Others will be along later or tomorrow with lots more information and advice. in the meantime, know you are not alone any more. We welcome you, although of course this is a community we all wish we had never had to join.

Dee02 profile image
Dee02 in reply to HeronNS

Thank you so much, your comments are so kind.

Hello and welcome to the forum where you will get lots of support and information. Have a look at some old posts, Dorset Lady has some helpful links with lots of information. Pred does give you a moon face at the beginning but it will go away as your pred is reduced. Don’t worry there is light at the end of the tunnel. You will get more help in the morning. All good wishes.

Gosh you poor soul. What a rotten doctor, putting the fear of God into you, then abandoning you with no information. You need to be in the hands of a good Rheumatologist. In a sense the Endocrinologist is secondary. If you have Giant Cell Arteritis then you are being under treated. Most people start on around 60 mgs to safeguard your eyesight. You need to have medical expertise right now to ensure you are on the correct dose for GCA. It does sound like you have PMR as well. If you get no satisfaction with this doctor or any other in the practice, I would go to A&E. I understand that you have other conditions that makes your treatment complex. You do need to be fast tracked to a Rheumatologist.

May I ask what this doctor frightened you with?

Was it your pre existing borderline diabetes, because Pred can bring this on, without a really careful diet - low or no carb.

Or is it the fact that a GCA dose will put a strain on your existing kidney?

Actemra is a drug that you might be a candidate for. It needs to be prescribed by a consultant. I believe that it reduces the time on and amount of Pred and has been authorised for GCA patients.

I am also dismayed to hear of another sufferer who has been fobbed off by a lazy, ill informed doctor - for so long as well. Let us know what happens and a warm welcome to the forum that never sleeps. You will find that it helps a lot.

Dee02 profile image
Dee02 in reply to SheffieldJane

My GP sat me down and said the dangers of Pred, said it will make me diabetic, and can effect my kidney.

It was all the bad things about taking them, I care out feeling so bad.

The only information I have got is from the internet, and that’s hit and miss.

If I’m honest I feel bad for having this, and now I’m diabetic it’s like the wagging finger and I told you so!

I guess I’m feeling pretty low right now, the fatigue is terrible and I’m virtually house bound :(

I’m just grateful that I’ve found this forum, reading through all the posts has helped, but also made me a little overwhelmed, I thought taking the pred and everything would be fine. For the first couple of weeks on it I felt like Wonder Woman, I had all my energy back, and then bang, back to how I was and worse

Is it type 2 diabetes. This can be improved if you cut out the carbs ( I know).

Do you have a kidney specialist that you can request an appointment with?

The GP should/ must refer you to a Rheumatologist.

I am sorry you feel low, you have good reason. We have one drug for a condition that puts our sight at risk and he makes you feel bad for resorting to it. I would be depressed - most people would. The fatigue is awful, we call it deathly. I cope by observing strict naps or at least lying down rests during the afternoon and going to bed early. I really pace my activities. Even at Christmas, all on line and early. I have a very hands on husband, thank God for him. He actually enjoys all the cooking and prep. When you get on a proper dose Wonder Women will re-emerge but you still have to remember that you have a serious systemic disease and you must pace and rest to recover. Give us updates!

Sending best wishes for you! For a month after GCA diagnosis, I was depressed with “why me “ and “ what did I do to deserve this”. And the fatigue was overwhelming for a few months.

I’ve been on high dose prednisone (60 mg, 55 mg, 50 mg ) for several months now, and my body is adjusting to it. The fatigue is leveling off, and I’m learning to pace myself which helps.

This condition gets better over time for me, and I hope it does for you. This is a wonderful, informative, and supportive forum, and I hope you stay with us. It’s been a lifeline for me. This is such an uncommon condition, there is no one I know to to talk about it with, I felt so “in the dark”, and this forum is a blessing. Again, best wishes.

It will improve! I was only diagnosed with PMR 8 weeks ago, and I’m in total denial! Also diagnosed as prediabetic a week later so nothing to do with steroids! I am lucky, no CGA, but already have Fibromyalgia. There’s a huge wealth of knowledge, & lovely caring people on this site...stick with it & learn...I am. Don’t forget to be positive about the little things you can do...& rest (which I don’t, but boy do you then suffer for it)! The keto diet works for me (but have broken off for 12 days of Christmas)...which is naughty, but nice. Good luck!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, and welcome

“Sorry for the long post, I guess it’s quite cathartic to be able to let it all out, as the last 3 / 4 months I’ve had “come on, pull yourself together, sitting in the house isn’t helping””

You don’t need to be sorry, and the comment really doesn’t help - especially from people who don’t understand!

This is my post to (hopefully) help newish patients- it’s quite long, but please keep it so you can read it when you want to. It has links to other information that might also help.

healthunlocked.com/pmrgcauk...

Unfortunately many doctors seem to have a fear of steroids - and yes they do have side effects, but then so do all drugs - but with steroids they can all be managed.

Please stick with us, we’ll get you through this.

PMRpro profile image
PMRproAmbassador

Welcome - one thing you won't get here is "pull yourself together"!

Everything I would say has been said - except your GP is totally out of their depth and needs to arrange emergency appointments with the rheumatologist for the GCA and the endocrinologist/diabetic clinic and renal clinic. You are a complex patient and your GP is doing you no favours with his scare stories. I'll add MY scare story: badly managed GCA puts your vision at risk. Emergency means NOW, not after New Year.

Being on pred doesn't inevitably make you diabetic - but you have to know how to manage it best and be monitored by people who know what they are talking about. Cutting carbs, especially processed carbs will make a big difference and if you end up requiring insulin, so be it, the need will improve as the dose is reduced - but the dose can only be reduced once the existing inflammation is under control and it can only be reduced to the level that is required to manage the daily new batch of inflammation that this illness produces.

You shouldn't be getting kidney pain - do you have a regular renal consultant? If so contact them. I suppose it is too much to hope you have access to a different GP? And please - can you tell us your country/region on your profile.

Dee02 profile image
Dee02 in reply to PMRpro

I’m in Wrexham North Wales. I don’t have a renal specialist as my GFR was ok at 63, it’s now dropped to 51, I’m hoping that it stays there. I do see a urologist who is sending me for a kidney scan.

I have another GP appointment on Monday that the nurse made for me as she is worried because my blood results are all over the place. I am trying to get to grips with them myself.

Thanks to all your advice I will insist on an apt to see a Rheumatologist.

This sounds weird but I just want to get back to work, my job means so much to me. When I tell the GP that I am housebound they just don’t care, I’ve told the nurse that I don’t feel supported at all, this on top of my other conditions, I’m now taking over 20 different tablets a day, and not had a meds review.

I feel so much better reading all your replies and I can’t thank you all enough

PMRpro profile image
PMRproAmbassador in reply to Dee02

You urgently need a medication review - no doubt some of them are to deal with the adverse effects of others! It is a common complaint in the UK I'm afraid and particularly irritating when using a different drug would probably avoid the adverse effect anyway!!!

Hi Dee02,

I am a newbie too, and without some of the the advice I have received on this forum I would be in bad place.

In addition to all the responses so far I would add that I got kidney region pain whilst i was in diabetic phases and had ketosis - urine smells of bread etc. especially during muscle wasting phases of weight loss.

PMR and GCA don't seem to fit into neat tick-box categorisations for diagnosis or 'Treatment' and the sooner you can get to a Consultant the better. However I am also disappointed by the poor support from your GP. My experience is similar in the UK; fortunately I saw one Doctor who gave my initial diagnosis and got me off the floor (literally) and had to presence of mind to consider GCA related symptoms in my initial Pred dosing.

Subsequent experience led me to conclude that I had to inform myself (again thanks to this forum) and I had to drive the 'medical professionals' for my sanity and own peace of mind. I now keep a diary and write up a daily records of symptoms, sleep, exercise, food etc. Before each consultation I write a summary of symptoms and questions I want answered (however simple). I present this note to the GP, or Consultant, at the start of each consultation and note their thoughts and answers. If I don't understand an answer I respond with 'Can you please explain that more simply'.

I hope that either the Hospital or your GP give you a Consultant referral in short order - please feel empowered to push them if they are reluctant.

Whilst writing I must again express thanks to PMRpro, MrsNails, SheffieldJane, Pixix, DorsetLady and others who either responded to my initial requests or have written so much over the years that I have found on this forum.

Thank you all for you kind replies, it’s given me some insight, and hope going forward.

I was beginning to think that this was going to be my life.

I’ve had terrible health since my 30’s and have dealt with everything single issue, dusted myself down and carried on. Surgery after surgery in the old slice and dice days! But I have never felt so poorly as I do now, the pains and fatigue are horrific, but now I know it’s because I’m not on the right dose.

The nurse told me about some bloods , started at 8, went down to 4 and are now at 10. I don’t understand them as I was so overwhelmed about being diabetic and having yet another thing to deal with, but I’m armed and really for Monday.

A huge thanks to you all 💝

PMRpro profile image
PMRproAmbassador in reply to Dee02

Possibly either ESR/sed rate or CRP - both are markers of inflammation. The fact it has gone back above where you started having been much lower suggests you really are not on enough pred to manage the illness at present. Whether your GP likes it or not - you need more or the level will continue to rise - and that is a sign the illness is winning and putting you at greater risk.

Dee02 profile image
Dee02 in reply to PMRpro

I am at the GP on Monday morning and I we need firm, and telling him that’s for sure. Thank you all so much

Sorry I did forget to ask, are the horrific sweats normal? And if so how do you deal with them? They are terrible, I find my face is dripping and my hair soaking

PMRpro profile image
PMRproAmbassador in reply to Dee02

Afraid so, they can be part of PMR and/or GCA and they can also be partly due to the pred. And for some poor souls they get both whammys! For me, the sweats can be a sign of a starting flare because the pred dose is too low.

Dee02 profile image
Dee02 in reply to PMRpro

I get them terribly, it’s freezing and I’m stood with sweat running down my face and my hair stuck to my head 🤦🏻‍♀️ I’ve found some decent makeup’s that last longer than others and got make up blotting paper, but It’s so embarrassing especially in work meetings

PMRpro profile image
PMRproAmbassador in reply to Dee02

I don't use makeup so don't have that problem. If you put up a new post people will offer suggestions for coping better. I wear layers so I can strip off decently!

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