It's been 77 days since my official, semi-conclusive PMR/GCA diagnosis. That's 77 days after waiting 19 days for the headache to go away (Yeah, yeah, stupid, I know!)
In that 77 days there have been 7 GP appointments, 2 Rheumy appointments, 2 trips to A&E, 1 DEXA Scan, 1 Abdo/Pelvic Ultrasound and 3 blood tests! And get this... I have ingested a whopping 3,870 mg of Prednisolone and cried myself more than a few rivers.
However, today, in approximately 7 hours and 30 minutes, I will see Dr Rod Hughes.
I'm not exactly sure what I'm expecting from this appointment... A Miracle Cure? A new diagnoses? The "It's just a virus" standard response?
No, I don't think so... I believe I'm hoping for an informed, educated, experienced, reasonable, second opinion.
I'm looking for a somewhat "tried and true" taper down schedule, that's based on factual historical data, with proven positive outcomes; and I'm looking for someone who will LISTEN TO ME!
This site has been a Godsend! It's Administrators and Members a wealth of invaluable information and advice. I have every reason to believe that this doctor, recommended by so many on this site, will deliver on these expectations!
I'm not expecting miracles... I've done my homework, I know these diseases suck and there's no getting around them. However, it would be nice to be listened to. Heard. Shown maybe the slightest bit of empathy and understanding.
I'll be happy if he educates me, gives me a viable plan and sends me off into the sunset with a bit more optimism and hope.
I shall be looking forward to seeing how you get on. I seen a private consultant in November who diagnosed PMR but the information he gave me was woefully inadequate 🙁. Whilst the prescribed 30mg of Pred took the pain away in a few days and gave me a boost that made me think I was back to normal I discovered this site and realised he had told me nothing!! I have my first appointment tomorrow with my GP to discuss tapering the dose and I am hoping that she is understanding in doing it slowly. Depending on the outcome of this I may contact Dr Rod Hughes for follow up treatment so good luck 👍with your appointment and will be looking forward to seeing how you got on 😀.
Thank you!!! And very best of luck to you tomorrow with GP and taper down plan! My first attempt at tapering did not go well. The Rheumy was way too aggressive and I "crashed and burned." Ended up going from 60, 55, 50, to 45 to 80! I'm at 70 now. I hope you're doctor has a more proven plan. GOOD LUCK!
Good luck!
Be sure to mention the problems you had with your sinuses etc for a year beforehand, medics are taught the diagnosis is always clear when you take a really good history going back far enough.
A good question is always " when did you last feel well " , give your history from that point.
in reply to
YES, GOOD TIP!!!! Thank you.
I spent a year chasing sinus issues, that I don't think were really sinus issues! If only someone had put 2 plus 2 together... even my eye doctor mentioned the other day I had been complaining about headaches for the past two years! : 0
Best wishes on your visit, Mamici ! I hope that Dr. Hughes impresses you and that you walk out with a solid, workable game plan. (He’s going to be surprised and pleased to meet such a sharp, interesting, informed patient.)
I will welcome what you will have to tell us after your visit, I have been on pred 6 years and at the moment feel so ill with breathlessness/dizziness/tiredness, that I don`t have the energy to move much let alone make an appointment to see Dr Hughes. (which I want to do)....doctor has made an appointment to see her next week!.....rang yesterday feeling so ill....I have been pushed from one useless rheumy (you have to get off pred in 2 years.....and did, leaving me like this) to a rheumy who isn`t sure it`s PMR, but hasn`t a clue why I`m in so much pain!.....now all these added problems....if I go back to him he will say it`s steroids get off them, he thinks 2 years is the time to get off pred too.....so, good luck.....
Ohhhh my.... I am so sorry to hear this! 6 years, I can’t imagine. Wow! I will hold space for you and ask that the universe brings you some peace, relief and answers soon! ❤️
I definitely feel better since rheumy said to take my own sweet time tapering. I feel a bit more in control. Sadly it came 20 months in. Gp already said 1to 2 years on first visit so I knew it would be a while.
After a year under another rheumy who failed to come up with a diagnosis, I took a typed potted history of that year to my first appointment with Dr Hughes which, after reading, said it would be useful for the file: symptoms, blood tests, scans, dates etc. He confirmed both GCA and PMR. Having a list is helpful as it can be so easy to forget things. Good luck - if my experience, and that of countless others, is anything to go by, I feel sure you will walk out feeling better than when you walked in. He's presently involved in research into GCA linked with Leeds University, so you might get invited to take part.
I just asked BUPA if I could see him as I was not thrilled with my Brighton Rheumy.. they said "yes." He is on their plan and I had ££ left on this claim, so it was no problem. If I like him I will continue to see him (privately) even though he is 1.5 hours away. I don't think there are any special rules or prerequisite, but others would know better than me.
Longtimer, no, no-one has to do that but it can be very useful, especially if memory suddenly decides to fail us! I didn't need to access anything from my doctor/rheumy as I had already catalogued everything during that year and saved it on the computer. It probably helps in that I'm someone who doesn't just accept being told that blood tests are okay - I always ask for the actual reading or a printout. It sounds as though you're having a really rough time, especially after so long on Pred and, if you have the opportunity to get to Rod Hughes, then I can tell you he comes highly recommended. I do wish you well.
I will try to try to write down all the awful memories of pain, pred and rheumies from the past 6 years and test results........it will be a lot....can`t do it today though, feeling too low....tomorrow is another day....and hopefully will get the energy to see Rod Hughes in not to long in the future.....must put that kettle on, all helps.........
Hope you achieve a great deal of info/comfort from your meeting with Dr,Hughes. Does he practice at St.Peter`s, Chertsey? That was my local hospital until I moved near to Worthing.
My headache lasted for 35-days because the stupid doctors swore blind I was suffering from Neuralgia and dosed me up with other medications continually increasing the dose when they had no effect. Was only when my darling wife accompanied me to the surgery and waved her bottle of Morphine Sulphate at them when they said Yes you can have some of that. In my befuddled state giving myself a dose when I tipped half the bottle down the sink and asked for some more and explained why the three doctors at the practice all gave me a bottle each and one said if the headache is still present in 48-hours we'll make a Neurology appointment and the Neurologist identified the problem GCA as I walked through the door prescribed Prednisolone at 60mg per day and two days later the headache was gone. Then I found out that I needed a biopsy to confirm the presence of Giant Cells in the artery which I had three days later.
Hope you are feeling a bit improved it does get better in time just have to wait for it to sort itself out.
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Getting past doctors receptionists!!
So it may be PMR as well!!!!
Hello out there, I'm back!!
First visit to rheumatologist, fibromyalgia confirmed as well as PMR!
