Hello again
I'm now overdue my annual checkup at hospital by 11 months. On enquiry I'm told the rheumatologist has been off sick for months, they are trying to get another from Stockport to fill in!
Can I ask my GP to transfer me elsewhere? If so any recommendations in Cheshire/ north West for a rheumatologist with experience of PMR.
Thank you again.
Yes I would. When it happened to patients of my Rheumatologist, she got a replacement quite quickly. Ask your doctor to shop around for you. 11 months is too long. Right at the beginning I asked to be referred to a Rheumatologist in Leeds who I knew of by repute and they did it.(Not my home town). How are you?
Hi Jane, I'm struggling a bit, couldn't take methotrexate so my doctor wants me to see a rheumatologist for advice. I've tried every which way to reduce below 7 mg preds.
As you may see my other post my cholesterol too high, apparently preds can have that effect, very worrying for me as my family history is dreadful, I've already outlived any of them without serious problems by 7 years. I'm 70 this summer.
I got stuck at 7 mgs, it is a really tricky stage for the afore mentioned Adrenal reasons. I was stuck for a year with several failed attempts to taper down, then one day for some mysterious reason I could. When I had my first Adrenal function test ( Synacthen) it showed that they were under active, as I got lower a subsequent test showed as normal. I am sure this all added to the difficulty. I didn’t like the sound of Methotrexate ( another heavy drug with side effects) I was offered it , and refused it, several times. I don’t think it is helpful for medics to ratchet up the pressure to come off Pred. It just adds in stress and panic. I am down to 4 mgs now but have a sinus infection and am on Amoxicillin, so I can’t really judge. My family medical history is not great either but that is only one factor in how we get on, there are many. In your shoes I would aim for a slow gentle taper of 0.5 with pauses if the symptoms creep back. A good Rheumatologist might help but they have limited options really. Methotrexate seems to be about it at the moment, with no real guarantee. I hope you get over this hump soon. Look after your diet to counter the cholesterol issue.
I am left to wonder what your GP thinks a rheumy can offer when you have already tried methotrexate and it seems to have achieved zilch. 7mg is a low, so-called physiological dose, and to most intents and purposes safe. The next option might be leflunomide which I personally would be very wary of even trying in your situation because it can lead to potentially fatal liver damage when given together with cholesterol lowering medication.
It looks to me as if 7mg pred is a best option - because in the UK you aren't going to be offered tocilizumab in a million years. And it raises cholesterol too.
Dr Vinodh Devakumar, Consultant Physician and Rheumatologist. The Royal Oldham
Hospital
He was a patron of the PMR/GCA North West Support Group before it closed down. You did say North West, however I am not sure how far away Oldham is from you.
Let me know how my geography is please. 🤔
I did get my GP to get me a referral to Oldham 2 years ago, but sadly Dr Devakumar no longer saw patients, he was promoted to an executive position. Oldham is about 25 miles away, so not to bad. Please let me know if you think Dr Devakumar back on staff. Thanks
When l moved to Telford there was No Rheumatologist at the local Hospital, they were waiting to appoint a new one!.....
So l asked my GP if she knew one who Specialised in PMR so l went to see him Privately as l was hoping to return to taking Methotrexate, he arranged to see me at the Orthopaedic Hospital in Oswestry, l still had to go on the NHS Waiting List to be seen (3months) but am now pleased to be back with a Rheumatology Team.
You can try but you may find the same issue , especially if it is follow up appointments and not for diagnosis or urgent changes in your symptoms and treatment needs.
There is a UK wide shortage of Rheumatologists and most Units are short staffed. Some areas are far worse off than others , North Wales , for example has 3 and a part timer for all of the hospital's combined.
Before transferring it's probably better to do some of your own research first . Check on hospitals online websites to see what the average waiting time is for appointments at their Rheumatology Units , and, contact the Unit you are with via the Secretary of the last Consultant you have seen to request an estimate on how much longer you are likely to have to wait ( explain to them that you have certain new issues you need to discuss if you have them ) also request if you can be placed on the list of people whom will take a Cancellation as well this often gets you an appointment within the month . You may find staying put will have you being seen sooner , if you were happy with the Rheumatologists knowledge and help it's sometimes better to stay with the familiar than having to start a new consultant relationship which can sometimes bring its own difficulties.
Hi, I did speak to the secretary, the rheumatologist has been on sick leave for months, they are in negotiations to get one to stand in one day a week from another hospital, but that can take some time.
My GP is wanting to know if there's an alternative to methotrexate, having read these posts I don't think there is!
You have FHC as well don't you , are you seeing a Specialist for that ?
It can have an impact on muscle pain as far as I know , have they checked whether part of your difficulty tapering your steroids , or part of your current pain could be partially due to NonPMR pain or Muscle Pain from higher doses of Statins?
That's a difficult one, the heart specialist who diagnosed FHC I saw 20 years ago. My statins were fine before onset of PMR, one possibility is we've been under tremendous stress for the last 12 months. Losing our daughter to breast cancer at 45, I'm thinking that may be the problem. I believe stress can play havoc with the immune system. Thank you
Stress can also play havoc with FHc , if your Statins aren't doing the job at maximum dose your GP should really be referring you for more current testing for your FHc to a Cardiologist , or Endocrinologist with Lipidology , if the GP isn't really used to treating a patient with FHc and isn't offering any further suggestions apart from Statins.
They can do the appropriate blood tests and put you on the next line of treatment to get that under control . A change in Statins or drugs for FHc may just help with your Pain Levels and othercsymptoms and make it easier to work out what will be the best next treatment route to help with your PMR and to make Tapering / Recovery easier.
It would probably be of great benefit for you to get back to the GP and request that you can be referred for your FHc , if they haven't arranged it already , as soon as possible.
Aren't you allowed Methotrexate because of the FHc or is there another reason , if you don't mind me asking?
No, I tried methotrexate but it made me feel awful and however slowly I tried to reduce preds I flared quite badly, so I stopped taking them.
My GP has changed my statin and is seeing me shortly to discuss, he said we could double rusvastatin safely so I'm sure we'll be doing that. I agree another visit to a specialist in FHC a good thing, ps all tests on heart etc have come back clear.
As I've said previously my siblings and parents, aunt and uncles on both sides either died or severly disabled in 40/50/early 60's. I'm 70 this year so doing pretty well.
Were any of your relatives proven FH as well?
Good to hear that your heart tests came back clear , did liver , kidney function come back clear too?
Have you tried looking at the FH Foundation website for more info ?
You might also benefit from joining the HU forum groups for the British Heart Foundation and Cholesterol Support as well as PMR/ GCA UK as you will be able to get a lot more information from other sufferers of FH in these groups too. It's often good to be a member of all the groups that help each of your conditions then you can post a question on each, pool the advice from the different groups, and just use the information that is helpful for all of your Health issues to create your own individual Self Care to do at Home.
I have a friend with FH , as well as other things , and I know that they were changed from Statins to another drug but her original diagnosis had to be confirmed again via a specialist before the change was made . The increase in the severity of her EDS on her body caused an increase in both her FH and Asthma symptoms , so there could be a possibility that something like PMR could have the same effect , both from the illness itself and the drugs used to treat it , I don't know if there would have been any research on that though.
She has had a bigger reduction in Cholesterol since the change in meds , her levels are better than mine at the moment.
She also had to tell her Opthamologist about it as they need to know as they can keep watch for any changes via her eyes , she also gets Achilles Pain from FH not just from her EDS.
She can't do the LC/ HF diet in the usual way as although diet can't control FH it can reduce the Normal Lifestyle Increase in Cholesterol that can make keeping the affects of FH on your Heart Health harder to manage.
She eats quite a lot of oat products and keeps away from red meat , processed and high saturate foods and dairy and has only a few eggs and occasional portions of shellfish , coconut products or nuts.
She eats alot of green and colourful vegetables and fruits , she only has olive or avacado oil. She isn't on any blood thinners and takes a daily Vitamin D and garlic supplement.
She takes steroids for Asthma.
She has to self massage her joints and heels to help circulation and reduce the pain with getting fat deposits in these areas and finds gentle swimming and aqua exercises and short walks have helped with her FH as well.
Good luck with it all and I hope you get seen by someone for your PMR and FH soon.
Thank you for all your input, my diet very similar to your friends. It's only the last year my cholesterol gone above acceptable levels. Initially mine was 9.6, sadly both my brother's have the same. The eldest survived until age 59 having had heart attacks and bypass surgery in his forties. His initial cholesterol level 13.6!.
My younger brother severely disabled by a cerebral hemorrhage at 62.
I'll speak to my GP about further investigation.
Regards Jan
Hi Jancorb
I have seen a Rheumatologist at Stepping Hill Hospital in Stockport. I have had PMR for 3+years. I could not tolerate oral bisophonates. I soldiered on for 3 years. My mobility reduced and we downsized house to be nearer family. Our new GP phoned me following my initial visits to ask why I wasn’t on any bone protection. My previous GP had not suggested an infusion. The new GP referred me to the Stepping Hill Rheumatologist who referred me for an infusion which I was given 6 months later and now yearly. Meanwhile I was hospitalized briefly with three spinal fractures last December. I was discharged with a back brace and a diagnosis of severe osteoporosis of the spine plus osteoarthritis. The Rheumy said he would prescribe methotrexate if I could not reduce Pred. I have been down to 7mg several times. I am very reluctant to take Methotrexate and will refuse when I see him again. I am reducing pred very slowly. On 8.5 reducing to 8mg on the dead slow nearly stop method. I showed this regime to my Rheumy who was not impressed. He had little else to offer having referred me for the infusion, I do have other health issues which do complicate things.
This health forum has helped me so much. Hope this ramble helps. Best wishes
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