Can anybody inform me if they have been diagnosed under around 50 and was your blood tests normal?

sorry to hear you're going through this, and some docs I have seen been hestiante with me without an exact diagnosis because the pred can make you feel and mask things. I am starting to think maybe PMR, do you have weakness in your hands or numbness by chance?

Do you have weakness/numbness in your hands? Where - which fingers?

Hi Elieen, numbness (not completely) is on palm side, basically that sensation goes up all fingers on palm side and pins and needles on fingers tips off and on. The weakness goes off and on, if I try to use hands like type and feels weak to grasp things. Hands go off and on tanned complextion, with couple fingers going purple a month ago and finger tips bluish but that's only time. I seen only the muscular neuro's in the city, she said it's not muscular. My leg and arm get weak and stiff (especially leg)if i try to walk around quite a bit lately. My right calf feels very sore like charlie sore around the middle (not signs off blood clots with Ddimer test and ultrasound on calf). My feet have been numb on and occationally burning feeling in left foot but has got a little better and there is no discolouration on feet (just normal). lost some eyesight in right eye, where I have temple muscle very swollen, i seen a maxillofacial surgery this week and said he doesn't think it's from TMJ, I get tenderness on back of head and so on and feel strange to touch it. Jaw gets stiff especially on upper right side, and occasionally right and cracks. Alot of tension especially after movement like say attempt to walk a few blocks. My vision seems strange like trying to watch a soccer of basketball game, anything with fast movement seems a little scrambled, but eye specialist said my eyes are fine, except right teye and he just said need reading glasses. I have shortness of breath, stomach pains since this all started 4 months ago, I have hearing effected all the time like plugged ears in plane, and ears have gone bright red quite few times. I have beau's lines (horizontal cracks) on nails, colouration little off, developed lichen planus in mouth. I have nausea, dizziness quite a bit, all i do is lie down most of the time. So these are current symptoms, that started with I think some type of virus which was extremely difficult in August with alot of trips to emergency.

All very strange and really not PMR-typical - I'd wondered about carpal tunnel but too much of your hands is involved. I do hope someone comes up with an answer though.

Hi David

I was pretty fit before it kicked off and only just over a month down the line and haven't notices weakness. I struggle to weigth bear in the morning but this gradually wears off.

oh ok, well i prob can maybe rule that out..1st neurologist, who I found useless suggested carpal but the problem with this my pinky gets tingling and numbness and he suggested it doesnt. I just didnt say anything but this gradually came on worse week after week as the illness progressed. well that's good maybe it's not PMR, but oral surgeon and dentist who arent experts suggested getting biospies at this point for GCA.

Symptoms affecting the pinky are usually due to the ulnar nerve being trapped somewhere. Of course, if both the median (carpal tunnel affecting index and middle fingers) and ulnar (cubital affecting pinky and ring finger) nerves are involved that would affect your entire hand. They could both be involved at spinal level or at wrist level - and inflammatory arthritides may cause wrist problems.

There is absolutely no evidence that mtx will help you get off pred altogether - it does not replace it, it merely potentiates the effect of what you take IF YOU ARE LUCKY, unless of course it isn't PMR. It doesn't work for everyone. However - unless you try it you won't know if you are one or whether you can tolerate its adverse effects - which I found worse than PMR! But you can't simply take mtx, you MUST start with both and then taper the pred, no different from what you were doing anyway. Whether it is better for the body is a matter of opinion - I have no identifiable side effects from pred even after over 9 years, no diabetes, no osteoporosis, not even significant change in bone density. mtx, on the other hand, led to fatigue which was overwhelming and worse than anything I've had before, and my hair started to fall out in clumps! I itched all over, bruised like mad and any possible pred effects, such as hunger (never been a problem before) and sleep problems seemed magnified.

I would be filing a complaint about your new GPs - to refuse to provide pred for a patient who has been on it for years is a potentially dangerous action and you could ask how they feel about a medical negligence complaint. There is no evidence your adrenal function will seamlessly take over to replace the pred that was providing about half your adrenal needs and an adrenal crisis can be a very nasty experience.

I do hope you can come to an agreement with your private rheumy. Trying mtx is always an option and work from there but you must get some pred. I assume you are in the UK? Your pharmacist should be able to give you emergency supplies for tomorrow and a few days until it is sorted out, A&E or a walk-in centre is also an option. And if all else fails - a new GP.

I am just horrified that a GP can put your health in jeopardy by refusing you more pred. Do you think they are just going through everyone's prescriptions and cutting them down in a mindless sort of way to save money and assuming you will complain if not happy?

Thank you for replying so quickly and mtx side effects sound ghastly.

I must put some faith in rheumatologist this time, maybe he will suggest something else, due to the heel swelling etc.

I intend to be at GP surgery tomorrow early and will indeed make a huge fuss to get a prescription and will file a complaint if refused.

I am in the UK! London, and have once in the past, paid to get pred as forgot it on holiday.

They did however have to phone my practice so that may be a dead end!

Thanks for help.

DJ

That is exactly what they are doing, cutting down on cost to the practice without listening to the patient.

DJ

I must emphasise not everyone has problems - some people take it and are fine. Nausea and post-mtx flu are the main complaints - I had neither!!!

But if the GPs don't cough up - you could spend a few days in A&E...

I rang the surgery early and said I would be in at 11 am to collect my prescription and would file a medical negligence complaint if they did not give me it.

Surprise surprise the new receptionist handed me the prescription, but with no apology. Thanks to you Eileen for putting the words into my mind!

Then to the rhuematologist appointment. He said 4 mgs is a low enough dose to stay on if I wanted but he would prefer, to see if I could taper off, by going down one mg a month starting Jan. 1st. I have read the other tapering off recommendation but will do as he says this time.

Dexa scan ordered and all blood tests relating to inflammation to be taken when I get as far down as possible.

He did not want me on Mtx as monitoring is essential and he said ideas have moved on. Lumps on heels nothing to do with pred and he couldn't see what I was worried about!!

He agreed completely with the withdrawal symptoms being the same as PMR which he says is always a real problem when trying to come off pred.

So I will give it a go, as would so love to be off these wretched tablets. I will up the turmeric superblend and cut down on red wine!

Thanks for help and advice.

DJ

Sounds like an acceptable result - one up to the rheumy and you!

I'm interested in his comment about methotrexate and ideas moving on - do ask if you get a chance. I get the impression that it was certainly used more than the 2015 Recommendations would suggest is reasonable.

Even reducing 1mg per month you can do it slowly:

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

All it does is leave you a few weeks behind which is nothing in the great scheme of things when it works. It makes it much simpler to identify withdrawal/PMR. I find it takes about 3 or 4 attempts at the new lower dose before my body accepts that it is OK, the days in between mean you don't have long periods of feeling awful and wondering if it is a flare. Loads of people on the forums over the years have used it to get to lower doses than ever before - it does help.

I forgot to say the rheumy was worried about long term pred developing diabetes. Symptoms, frequent urination and tiredness I do have so am going to watch my diet. Its another reason for getting off this drug. I may well try the dead slow method of reducing.

Thanks for advice.

DJ

Get off the pred if you want - all that will happen is that your body will be left in a state of inflammation which has its own long term risks and as long as the a/i part of pMR is active you will have symptoms that will build up to be as bad as they were when you first went to the doctor seeking treatment.

Many doctors over-egg the long term risks of pred. I have been on pred for well over 8 years, might even be 9 years now, I've lost track, and a lot of the time at above 10mg/day. I have no sign of pred-induced diabetes at all. On the forums I am on there are some people whose Hba1c has increased as a result of taking pred - but relatively few really. Most of them have reversed the trend in their Hba1c levels by cutting carbs drastically which also tends to help the inflammation level and possibly lower the amount of pred you need. It also reduces pred-associated weight gain. But few have a comfortable life if they try to drop pred altogether - and immobility and the weight gain that tends to accompany immobility also both put you at increased risk of Type 2 diabetes so you may find you have cut out pred-induced diabetes only to develop another sort.