My appointment with Dr Wow

[Elaine-W]

I wanted to update on my appointment yesterday.

Dr Hughes was everything everyone told me he would be. He read the letters and blood results I brought with me and asked what I thought was going on. I told him I didn’t know what to tell family etc or close friends who ask me what is going on. He said I have GCA and PMR overlap. The GCA has settled down and I am dealing with PMR. He wants me to adjust the methotrexate from 12.5 to 15mgs and add 10mgs amitriptline as a painkiller. I found him to be thorough and so understanding of what we go through. Of course I cried when he asked me if I can cope on 10mgs pred. I won’t lie I am finding it very difficult. He feels it will be worth it to hang on for a bit to see if the PMR settles. I asked what I should tell my regular rheumatologist about seeking a second opinion and he said not to worry about it he will write to him. I feel completely whacked out today but relieved to be part of something instead of floundering. I said If it was a pick and mix I would rather have PMR than RA as that seems more serious. He said I would rather you had neither. What a nice man. I feel more settled today instead of wondering what else was going to be explored as a possible diagnosis. He said I am not a straight forward case but have done well to get down to 10mgs pred. He thought I would be stuck at around 20. On the way there I felt sick thinking if I don’t have PMR or GCA where do I belong. Doesn’t that sound dramatic but truly how I felt. I sat outside his office and became calm. I am certain it was the support I got from everyone yesterday. This opening up to others isn’t so bad after all. I might get used to it. Look out everyone and thank you all once again xx

[PMRpro Ambassador]

Told you so!!!!!!

[Elaine-W in reply to PMRpro]

You really did. We don’t call you the pro for nothing ⭐️

[DorsetLady PMRGCAuk volunteer]

Good...so glad you now feel better to cope with your illness! You just needed to speak to the right person.

[Elaine-W in reply to DorsetLady]

I certainly feel an emotional lift today. Finally I received more than would be could be should be’s. I understand these illnessss can be difficult to diagnose. I really do but it is horrible for the person trying to scramble around for answers over a long period of time. Thank and I hope you are well x

[DorsetLady PMRGCAuk volunteer in reply to Elaine-W]

Good thanks 😊

[jinasc]

Do you live in Surrey by any chance, within striking distance, if so, there is a brilliant support group. Contact details on PMRGCAUK website.

[Elaine-W in reply to jinasc]

I don’t unfortunately I live in Hertfordshire but thank you

[Hidden]

That is great news. The stress hormones will have been raging on the lead up to the appt so will make you feel tired etc. At least you ni w know the nature of the beast so ut s less scary. Well done for overcoming your stage fright. 🌻

[Elaine-W in reply to Hidden]

With the help of everyone here. We would be isolated without it. Strength in numbers and experience

[SheffieldJane]

Oh bless you Elaine-W. I am so glad you finally got an angel and you do belong to our wobbly little gang. Now begins the road back to health that we are all on at some point or other. Well done for handling one of life’s ordeals with grace and confidence.

Have a very happy Easter, to you and yours. 🌼

[Elaine-W in reply to SheffieldJane]

Thank you so much and the same to you and your family

[Soraya_PMR]

I’m really pleased for you. Having a ‘label’ means you know where you stand and which battles to fight. Such a relief.

I recall getting my knickers in a twist before seeing my rheum, having had ‘discussions’ (read: arguments) with my GP. SHE turned out to be rather nice, confirmed PMR, and I could have skipped away from my appointment. However the ‘whacked out’ thing you describe hit me soon after, and kept me whacked for a day or so, so probably quite a ‘normal’ reaction for us.

You’ve done well to get to 10mg! What a lovely thing to hear gives you more confidence to keep trying doesn’t it?

[Elaine-W in reply to Soraya_PMR]

I really do have some confidence now. In life I do but this thing has had me up against the ropes more than I would have imagined previously. Doubting myself, my inability to find answers. I realise not everyone can get to see him but it was time for me. My head was bolting with it all x

[Soraya_PMR]

Do we refer to him as Doctor Wow now?

[Hidden in reply to Soraya_PMR]

I love that!!!

[SheffieldJane]

I bet he’d blush if he knew. ☺️

[PMRpro Ambassador in reply to SheffieldJane]

I keep wondering if he has noticed how many extra patients he's getting...

[Hidden in reply to PMRpro]

Good question! In the letter he wrote to my Brighton Rheumatologist he mentioned that I had gone to him for a second opinion after hearing about him here....

[Hidden in reply to SheffieldJane]

He would for sure.

[1Purplecrow]

Well done!!❣️ The missing piece of the puzzle, getting a real “diagnosis”!

Eases the wretched worries of “what if ??????”. Now you can plot your travels through our PMR maze without fear of R.A. or of the other dragons that sometimes lurk in our worried minds.

Kind regards, Jerri

[Elaine-W in reply to 1Purplecrow]

You are so right. It’s the wee small hours isn’t it where you are alone with your thoughts and think maybe if I re word the questions on google I might read something new. It may take me in the right direction

[Celtic PMRGCAuk volunteer]

“Dr Wow”?! I’ve got to tell him that - he’ll love it.

So glad he didn’t disappoint and made your very long journey worthwhile, Elaine - we said he would come up trumps, didn’t we. Two other patients I have heard from have had similarly wow-factor experiences with him this week - long may you feel so much more confident with what you are dealing with, and long may he reign!🤴🏻

[Elaine-W]

I love the characters on here. You are amazing people x

[GOOD_GRIEF]

And so are you...

[Hidden]

What great news Elaine, he sounds like The Man! 👨🏼‍⚕️

You’ll feel so much better knowing what it is, expect to feel a bit bushed for a few days with all the up n down of the emotions!

I’m on Methotrexate (20mg) & tolerate it well, so if you ever have any questions please ask, l also take Amitriptyline, the trick with that is take it about 7.30pm if you go to bed 10.30ish, then any side effects are gone by morning, l knew someone who took it in bed at 11.30pm & was groggy the next morning until she tried my method, l got my tip from a Medic!

Chill out & relax this evening.

Mrs N 💅🏼

[bakingD in reply to Hidden]

Hi

I might be starting on Methotrexate and wondered if you had any tips on that to expect?either that drug or maybe Sulfasalazine but think my Rheumatologist would favour MTX

THANKS

[Hidden in reply to bakingD]

Hi bakingD

I have a Post l’ve written previously which l can forward on to you regarding my experience with Methotrexate.

Mrs N

[Hidden in reply to bakingD]

My experience with Methotrexate

I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.

Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath & my BP was through the roof & my resting pulse rate was 100+ so there was no choice but to try it!

I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.

At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.

I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.

For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg

Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.

That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.

It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.

If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.

Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other people have differing protocols.

If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.

Best Wishes & Good Luck 🍀

Mrs N

PS

August 2018

Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.

[bakingD in reply to Hidden]

thanks for the update wow you have been through a lot, thanks for the info though it has helped.Hope you continue towards recovery!

[Hidden in reply to bakingD]

No Problem x

[Hidden]

I am so very pleased for you, but not one bit surprised!!!! He is definitely one if the "Good Guys." I wish I lived closer, as I'd have him as my regular Rheumatologist. I am so happy you are feeing more calm an comfortable with your diagnoses. And yes opening up and lifting that burden off yourself can be very cathartic! We got your back... no worries!

[PMRpro Ambassador in reply to Hidden]

If you are moving to York you could get a referral to Sarah Mackie in Otley/Leeds - no private work but also very good.

[Hidden in reply to PMRpro]

Yes! That is true!!! I have read several studies written by her and have seen her name mentioned here.... cool!!! Thanks for reminder.

[SheffieldJane in reply to Hidden]

She’s mine mamici and worth the journey to Leeds or Ockley. Except she’s off sick at the moment. We don’t know much more.

[Hidden in reply to SheffieldJane]

Please can we share... please!

Bummer, I hope it nothing serious! 🤒

[SheffieldJane in reply to Hidden]

Yes I hope not. Rugger knows a bit more than me and Primrose sees her too. I didn’t find it hard to get a referral from Sheffield. It makes sense because these conditions are her specialty. Do it as soon as you get a new doctor. It is a tonic to see her.

[karools16]

Marvellous when somebody actually LISTENS and IS interested, isn't it? Glad all went so well for you.

[Jackoh]

So pleased it went well for you. As mentioned previously I see him too, now a NHS patient. Previously I went to him privately as my GP did not believe me that I had GCA as the horrendous headache was not in the temporal region. Sometimes we do lose confidence as we feel no one is listening and no one seems to know or care what is going on. So pleased that you felt " connected" and came away with a clearer idea of what is going on. I'm not surprised you felt whacked after what was a very emotional time. Hope now you will be able to see clearer your way forward. Best wishes