A few more questions from a new member

[Sophiestree]

Firstly, I just wanted to say thank you for all of the replies to my first post, I have found this group to be unbelievably helpful and definitely felt a little better after reading your responses. As this is still new for me, I do have a few more questions if that’s OK.

I reduced my dosage as per instructions from the Rheumatologist and immediately got light symptoms, reading on here likely due to the reduction in dose, but after two weeks I still have them, nothing major, or what they were pre-diagnosis, but pain down my neck to clavicle, stabbing pains in temples, headaches etc, pain in wrist, arm, plus backache around shoulder blades. I am reducing them further on Monday for a further two weeks 30mg-25mg and then bloods and a phone call to discuss. Is this to be expected?

Ever since I started on the steroids, from the 3 day IV to now, I seem to have a permanent eye infection. Treated myself twice now with Chloramphenicol. Coincidence?

Thinking about the symptoms I have been having, is it possible that I could have had a mild version of this for quite some time? I often got stabbing pains in my temples and felt like my head was being crushed, also the shoulder pain etc. It was just something that was going through my head in the middle of the night, when I don’t sleep…. Which is completely messing with me…. But that’s another story.

Lastly, does anyone have any direct contact details for either Prof Bhaskar Dasgupta or Prof Justin Mason. I did email Prof Mason at Hammersmith hospital, but likely it has got lost in a mountain of emails. I just wondered if anyone had a number for his secretary?

Geographically, as I live in the East London/Essex borders, Southend is actually better, or easier for me to get to, so wondered if I should try that too. But happy to go to Hammersmith.

I am all over the place on this one but feel I really would like to speak to someone who is more experienced in this, as my Rheumatologist literally rings, tells me how busy she is, talks about the dosage and goes. I have never even met her. Unlike most of the other consultants I see, resulting from the inflammation, had a liver biopsy on Monday and so am awaiting those results, but assuming it is all connected…

Thanks in advance, I was trying to make this one shorter, but clearly didn’t manage that!

[piglette]

You could contact Niki Briggs, Professor Mason’s secretary. 020 8383 1174

[Sophiestree in reply to piglette]

Amazing, thank you for that.👍

[DorsetLady PMRGCAuk volunteer]

Hi, no problem, just ask when things come to you.

Steroid withdrawal symptoms last a few days and usually come on immediately following drop in dose. If you still have issues 2 weeks on, then you may need consider that lower dose is not enough... so it’s that rather than withdrawal symptoms.

You may find that reducing again (even though you’ve been instructed) will just make things worse. So my advice keep notes so you can explain at next telephone appt.

And yes, early days you should be monitored - preferably before reduction to see if it’s wise - not after! But that’s the way it seems to be!

It’s very common for symptoms to be building up for some time, before things become far too much and you visit doctor - sometimes weeks, sometimes months, even years!

On Pred you are more susceptible to infections, so you may need to speak to GP rather than try and deal with it yourself.

[Sophiestree in reply to DorsetLady]

Thank you. I am going to have blood tests tomorrow and then again in two weeks prior to the call.

I would never have contacted the doctor had it not been for the high fevers and night sweats that I was having over weeks.

I also wondered if something like this can be due to stress, I lost my husband 5 years ago very suddenly, and unexpectedly, then had 3 pneumonias and a terrible time at work through most of last year that nearly broke me.... caught flu in Feb this year sitting next to two different people in the space of 3 days who were self medicating every 4 hrs, which lasted 3 weeks... I think that might have been the tip of the iceberg, as I had problems from March onwards really.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Oh absolutely stress is a factor. I was a carer for my late husband for a long time before my GCA struck. You have been under different sorts of stress for a number of years - and eventually the body can take no more and something has to give!

In our case that results in PMR or GCA or both.

[Sophiestree in reply to DorsetLady]

Being a carer is tough and you need support. Both my mother and aunt were disabled and my sister and I could at least share that... but everything seemed to be a fight to get what we needed... I have lost 7 family members in the last 10 years.

[Jackoh]

I personally wouldn’t taper your pred down any further with your symptoms at the moment. As Dorset lady said just keep a note of how you feel and then you have up to date info for the Consultant . I keep a very quick diary of the date, dose and a mark out of 10 for how I feel each day. I may also just add a line if I get specific pains at a particular time of the day. It takes less than 5 minutes to do but that way I do have an up to date record of any changes or problems. Do hope you have some joy finding another rheumatologist at this particular time.

I think the circumstances over the last 5 years would have been the perfect storm for GCAPMR.

All the very best

💐

[jinasc]

Failing other Rheumys here is another one:

Dr Rod Hughes – Consultant Rheumatologist and General Physician at Runnymede BMI Hospital in Chertsey, Surrey. NHS Consultant at the adjacent St Peter’s NHS Hospital since 1993.