Letter from the hospital

[Mandrose]

After my appointment on 05 Jan, I finally received a letter yesterday. As I have clinical symptoms of PMR, I am to start on 15mg of Pred reducing by 1 mg per month. My gp has got prescribe Alendronic acid & Adcal D3, so I'm going to wait until I have them before starting.

The consultant enclosed the letter referring me back to Opthalmology due to eyesite still being blurry, asking them to check for Ischaemic Optic Neuritis. He also enclosed the referral for Neurology to investigate the ongoing headache & hand tremor.

Im a bit worried as the hand tremor that was in my left hand has now got much worse & is also affecting my right hand - is this a sign of PMR?

My biopsy was negative for GCA - the MRI & CT were again normal,except for minor inflammatory change & retained secretion in the sphenoid sinus.

My blood tests have been - Nov CRP 50.4, ESR 34 - Dec CRP 5.7, ESR 13 - 05 Jan CRP 6.2, ESR 11. ANCA negative.

I've got such mixed emotions at the moment! I want my shoulders, hips & elbows to stop being so uncomfortable. I also want the headache to go away but I'm worried the hand tremor (which is now quite pronounced) indicates something other than PMR.

Is it normal to feel so worried & doubt the diagnosis?

[HeronNS]

I'm sorry you feel so awful. Sorry I can't give advice re your diagnosis, except I do know that there is a significant incidence of false negative biopsy for GCA, so I hope that your is not one of those. Please, if you get any worsening visual symptoms, go to emergency because it's better to be overly careful than to risk your eyesight. Regarding the AA, have you had a DXA scan? Too many physicians prescribe bisphosphonates as a matter of course when people start pred whether they need them or not. I (and others) can attest to the fact that it's perfectly possible to look after bone density while on steroids without resorting to the drugs. Calcium supplementation is a good start. You should not take calcium at the same time of day as you take your pred. I do hope you are feeling better soon.

[Mandrose in reply to HeronNS]

Many thanks for your reply HeronNS. I haven't had a DXA scan, in fact I've never heard of it. My GP is very good, so I'm hoping when I catch up with her she will recommend anything I need. I think I've gone into complete shock & panic! I am still worried about my eyes, so hopefully my appointment will come through very quickly!

Luckily I've been following this forum since my admission to hospital in November, so I'm feeling reassured about a lot of things 😄

I've not seen any other posts mentioning hand tremors though, so I hope someone will let me know they have the same?

Many thanks

[polkadotcom]

You have been referred to all the right consultants which I would take as a positive step. Yes, it's easy to doubt oneself under these circumstances, anyone would worry, but of course it is possible to have more than one condition to deal with (I should know) but with the diagnosis on PMR on symptoms (I have never had any raised inflammatory markers either) and the chance to try steroids should help tremendously with your other problems as the relief from pain is uplifting and very helpful.

Do try them as soon as possible, to ease any more worries steroids taken for only a few days/week is neither here nor there so if they don't help you will be able to stop taking them straight away.

When you see your doctor do tell him how you are feeling, he won't know if you don't. Writing it all down and giving it to him to read can save precious minutes in the surgery. I always do this as once I sit down in the chair in front of the doctor, my mind goes totally blank!

[Mandrose in reply to polkadotcom]

Thank you Polkadotcom 🙂 I'm really happy everything is being investigated properly but so wish I had the appointment dates for the referrals already. I think I need to learn some patience!

I've always found it difficult to say how I feel but I wrote a list for my last appointment so I didn't forget anything! I'll make sure I do the same for all upcoming ones!

I've no idea why I get so scared & forgetful in front of a doctor, after all most of them are younger than my children 😄

[piglette]

Before I was diagnosed with PMR I had bad hand shakes. I had to clutch onto a cup to drink. A useless GP said it was old age, I was just in my 60s. When I started taking steroids it seemed to go away. I hope the pred works for you. If you continue taking it a vit D and calcium supplement is a good idea and should be prescribed by your doctor anyway. As HeronNS says you should also have a Dexascan which checks your bone density as a side effect of pred can affect it. Personally I would not take Alendronic Acid until I saw that I had a bone density problem.

I hope things get sorted out.

[Mandrose in reply to piglette]

Oh Piglette, you have no idea how much I appreciate your reply, thank you! I feel like a weight has been lifted as I haven't seen anyone else mentioning hand shakes, so I was panicking.

I'm going to try & speak to my GP tomorrow to get everything sorted & will start the Pred as soon as I can 🙂

[piglette in reply to Mandrose]

Good luck with your GP. The pred was like a miracle in my case and started to work within hours.

Re the tremors, I remember reaching out for a bottle of water on the table and watching my hand try and clutch it. Quite frightening. Mind you the GP did not diagnose the PMR either, I was in agony and could hardly move. He said I had a virus.

[PMRpro Ambassador in reply to Mandrose]

I found I had shaking hands but it was mostly when trying to use them - gripping something led to shakes for example.

As the others have said - I would start everything except the alendronic acid. That I would refuse to take until I had the result of a desascan - and a few weeks without it won't do any harm at all. If your dexascan results are "normal" I wouldn't even consider taking it. But Heron can wax lyrical on that far better than I can.

[obrien23]

Hello Mandrose so sorry you feel really poorly. Discovering you have PMR can be an awful shock it was for me too. I personally wouldn't leave it too late before seeing someone about my eyesight, it is a very precious sense. I too have hand shakes mainly my left, but not all the time. Please go back to your GP let them know how worried you are, they are there to help you. You are on the best site possible here, they are so knowledgable and helpful I have found. Please take care

[Kitty49]

My thoughts are with you Mandrose......our fears can take over but believe that you will

Get better ......and again this site is more then helpful

Me got Man Flu ....so gonna hibernate for a few days but will comtinue to read posts

[Patience_1]

Hello Mandrose, sorry to hear you are having such a worrying time. I have not had significantly shaking hands, but have noticed I am more trembly.

Just to comment on the dexascan issue, my gp also prescribed alendronic acid at the same time as starting me on 15mg prednisolone. I took 4 of them (a month's dose), before increasingly wanting to question whether or not they were necessary - having read up about this med and read many posts on this website. I decided to stop, and asked my gp to send me for a dexascan. She was initially doubtful there would be any point to this, but agreed that referral was justified if it helped me to make a more informed decision about taking AA or not.

Went for my scan today, and should get results in about a fortnight. If my bone density readings are really poor I may then decide the AA is the lesser of evils; if density ok or not too bad I may persevere in doing anything else I can to protect my bone health (Ad-Cal + Vit D3, a calcium rich diet plus Vitamin K2 supplement which is supposed to help the calcium distribute in the best way possible, and a good amount of walking and other weight-bearing exercise).

Today at the hospital I got the best bit of news I've had in quite a while: because I am carrying excess weight I am getting some protection for my bones! Apparently post-menopausal women carry oestrogen (which is good for bones) on their hips - never thought I'd say thank goodness I'm hippy!

Hope you soon get some reassurance.

[Mandrose]

Thank you all for your kind responses 😄 I couldn't get in to see my GP but she sent the prescription to the pharmacy for me, so I'm ready to start taking them in the morning. I'll be seeing her soon so will ask about the scan.

My Rheumy called to let me know to start taking the Pred (the letter on Saturday beat him to it) He said my CRP is still grumbling, showing there is still inflammation & the Pred will stop it shooting up again.

I told him my hand shakes were much worse but he said this wouldn't be because of the PMR. He thinks it's a separate issue, which will be looked into when I see the neurologist. It'll be interesting to see if it improves with the Pred like others have said.

I'm feeling much more positive now and the thing I'm looking forward to the most is sleeping all night without my hips, elbows or shoulders waking me up.

Thanks again all, your support is appreciated 😄

[Ronswife]

Mandrose

Hi Mandrose,

My serious debilitating flare started early June. I was on Prednisone finally in August. I have had a lot of trembling hands, dropping things. I work with my hands so it's hard to do delicate jewelry work. Now that I am down from 15 mg to 7.25 I am less trembly. If I don't get the Prednisone dose right it gets worse. I hope you feel better soon and ask any question.