Dreading seeing the Rheumatologist

[Bramble2000]

Hi everyone,

I have an appointment coming up with my Rheumatologist which I’ve been under for the last 3 1/2 years (I’m in the UK, we don’t get a choice in who we see).

It took him a couple of years to finally diagnose PMR. During that time I’d become almost housebound. He insisted I take the Prednisilone saying if I wanted to get better, I’d take it. The problem is, I can’t take it due to horrendous side effects. I asked if I could have steroid injections because I knew I tolerated them better. He almost laughed at me saying surely you get the same side effects? I said no I didn’t. Anyway, he also said I didn’t have PMR because I was too young - 52, my PMR started at 49. This went on for a year with inflammatory markers going up and up. Eventually he ordered a pet/Ct scan and of course, there it was, crystal clear. He then said I could have methotrexate as an injection. I thought, ugh. I took about three months of it and my inflammatory markers did come down but that could’ve been the steroid injections I suppose. Anyway, the side effects again were horrendous. I just can’t cope with it all. I’m a single patient to an 18 year old son who has severe ME and is Autistic. I need to be functioning as much as possible despite the PMR without spending every day with my head down the loo or unable to get out of bed with exhaustion.

I did get a second opinion. I saw my old Rheumy who I really liked privately. Now the plot then thickened. Despite PMR being seen clearly on the scan, he said he wouldn’t have diagnosed it because I’m too young. He said I it’s probably periferal Ankylosing Spondylitis. He diagnosed me with AS several years ago via MRI. The thing is the other rheumatologist said it wasn’t my AS.

I’m a very anxious person. I’m suffering with PTSD. I’m literally scared to go to this appointment. I’m scared He’s going to make me take something I don’t want to take. Yes, PMR is horrendous but honestly, the meds were just as bad for me. Not sure why I’m writing this, just getting it off my chest! Thanks for reading. X

[PMRpro Ambassador]

You COULD request a different doctor on the grounds that your professional relationship is in tatters and you can't cope, Though presumably, you couldn't cope with that either?

What are you on for the AS?

[Bramble2000 in reply to PMRpro]

Nothing because the rheumatologist says nothing is working. That’s because my main problem is PMR. I was on Humira and my CRP was starting to come down but he took me off it.

[PMRpro Ambassador in reply to Bramble2000]

Where are you? Is a private one-off an option? You are being totally messed about and he's trying to make it even worse if that were possible.

[Bramble2000 in reply to PMRpro]

I can’t afford private, it was a one off when I went to see my old rheumatologist. It just blows my mind that the two of them came up with completely different things

[PMRpro Ambassador in reply to Bramble2000]

It does happen a lot, But they agree on the one thing they are both very wrong about - PMR and age!!!

[Bramble2000 in reply to PMRpro]

agreed!! 😆

[Body_bonkers in reply to PMRpro]

They most certainly are

[Blearyeyed in reply to Bramble2000]

Why did he take you off it ?Was there a reason given?

It seems irrational to do that if the medication was working as Humira can be an option for the AS as well.

[Bramble2000 in reply to Blearyeyed]

I’ve had loads of biologics for my AS. He took me off it because I have PMR and it’s not licensed for PMR.

[PMRpro Ambassador in reply to Bramble2000]

So what? If it improved your symptoms that is immaterial. And it may only be his opinion you have PMR - AS can present like PMR at some stages.

There is no cure - if a medication manages the symptoms - go for it.

[Blearyeyed in reply to Bramble2000]

That seems illogical if you already have AS and the Biologic was helping it , why would you stop treating one condition because you were going to start treating another condition unless that treatment would cause greater harm which it wouldn't in the case of PMR and Humira. Having PMR wouldn't stop your approval for using the Biologic for the AS symptoms and could well have had the added advantage of managing your PMR too.Perhaps that is the question you need to give this Rheumatologist. I think I would be politely, but firmly , be requesting to be put back on it again.

The questioning of people having GCA or PMR under 50 really annoys me , especially as I had GCA at 48 , and when the reason that this may occasionally happen in people whom already have preexisting conditions is obvious .

The body of a person with a pre-existing condition has already been under more wear and tear from another disease so they are more susceptible to get other illnesses , especially within the autoimmune or autoinflammatory spectrum that their original condition is a part of. Although a person with a chronic health condition may be under 50 by date of birth, the toll that there body has already suffered often gives them an internal body that shows the wear and tear of a body over 50.

I have Ehlers Danlos Syndrome , through research they have proved the body , especially joints, ligaments and connective tissues of an EDS patient can show as much as 15 years more wear than a healthy person of the same age. For me , by those figures, I may have been age 48 when I got GCA but my body was showing the wear of a person of 63 , putting my body well within the guidelines for PMR/GCA . Making me more likely to get conditions usually suffered by people of an older age at a much earlier age than expected . If you look at research for AS , RA and other conditions you are likely to find similar research with similar statistics.

The patient's individual medical history and clinical examination should always be the most important factors in making a diagnosis even when things like blood tests come back within a normal range, or, age , gender and ethnicity usually make incidents of a disease happening rare.

I hope you can get further forward soon , but if you feel like you aren't being listened too or can't work with your current Rheumatologist do consider requesting a second opinion and seeing a new one. Good luck , Bee

[Longtimer]

Sorry for your awful situation, I can relate to dreading seeing a Rheumatologist, have experienced that, I requested to see one that understood PMR! Doctor said I can try but you won’t necessarily get to see him. Luckily I did, made so much difference. Don’t give up, our physical and mental health is precious! Good luck keep us posted

[Body_bonkers]

Can totally relate to how you feel Bramble2000 but try to imagine everyone in this forum behind you when you have the appointment. They can prescribe what they want but you choose whether to take it. I take a list with me - symptom logger and list of concerns/queries so it places less pressure on anxious brain and plan something enjoyable to do after !

[whitefishbay]

Could you not bring a friend? Someone supportive and firm?

[Thelmarina]

poor old love - this sounds horrendous. What a muddle! Others with more experience will be along but sending you a big hug xx

[Greensleeves]

sending hugs and understanding Bramble , I would take the advice of these wonderful people over a rheumatologist any day, apart from a couple of good one’s .

You are in a dilemma, please remember you don’t have to do anything you’re not happy about or don’t want to take .

You weren’t too young by any means and could very well have both conditions.

The awfulness is you not tolerating the Pred to stop your pain and the increasing inflammation is the the main point .

You need something to help you function , for your child and yourself.

I will not take anything that induces nausea or vomiting . Have you tried gastric coated pred with an anti sickness medication?

Sorry I’m clutching at straws but feel anxious for you too.

As a lovely person said earlier, imagine we are all with you and the rheumatologist is a human being who can’t force anything onto you . xx

[Gossiplady]

hi Bramble! So sorry for you. You have my sincere prayers to keep strong. Re your anxiety, have you thought of homeopathy. No side effects and cheap to buy online. I would suggest Aconite or Ignatia. I have used homeopathy for decades on myself , my dogs and even my pony. Thinking of you.