Newly diagnosed for the 2nd time.

[lynne99]

Hi all, I had PMR 15 to 20 years ago aged 45/50. I was on pred for a long time and ended up being diabetic so had to stop the steroids. The PMR has returned and Dr has put me back on 25mg of pred for 1 week and then reduce to 20mg for the next week before another appointment. I have read your recent posts and don't know if this reduction is too big? I also fall over a lot, can that be a symptom. Thirdly, and finally I hope, I have had head aches for 2 months now and put it down to Arthritis in my left neck. The Dr sent me for physio, but this had no effect. Could this also be the PMR and should I cancel my physio nexy week? Thanks for being here

[optimist-ok]

So sorry to hear you are suffering again. About the headaches could it Giant Cell Arteritis? Important to check. I have both PMR/GCA but mine came together! Hope things go more smoothly for you.

[PMRpro Ambassador]

I doubt the drop will be too much at present - the big drops pose a problem for people who have been on pred for months. The drop he is suggesting for you is a normal way of using pred and doesn't usually lead to problems. Your doctor has started you at a quite high dose for PMR, the recommended starting dose is 15-20mg, but maybe he wants to hit the inflammation hard and also see if you respond quickly to the pred to confirm his suspicion of PMR.

Where you may meet problems is if he tries to continue that rate of reduction past 20mg. The next step, once your symptoms are well controlled, is to reduce to find the lowest dose that manages the symptoms effectively. To do that you need to reduce steadily but in small steps to avoid missing that end point and to find it most accurately. Do it in big steps and you might find, for example, that you are fine at 15mg but not at 10mg. If you had reduced 1mg at a time you might have found you were fine at 11mg. Some people also become very sensitive to dropping the dose and suffer steroid withdrawal pain - it has been said for years that reductions should never be more than 10% of the current dose. Even at 20mg that means not more than 2mg so 5mg at a time with lower doses is obviously a fair bit to do in one bite.

However things went with your first episode of PMR - don't expect this to be the same. The people I know who have had it twice have said they were totally different each time.

Yes, poor balance is common. Many of us found we tripped and even fell a lot. We also dropped things!

You mention headache - you are not showing signs of GCA are you? That must always be borne in mind with PMR.

Physio with PMR is only to be approached with very great care and with a physio who really does know something about PMR. Your muscles are intolerant of exercise, especially sustained or repeated actions so some physio exercises may pose problems. Very gentle massage and mobilisation may help your shoulder - something that commonly is found alongside PMR is myofascial pain syndrome and that can cause tightened shoulder muscles which can pinch or irritate the nerves and result in pain radiating into the shoulder and neck - that could be the cause of your neck problems. I speak from bitter experience! Go to your appointment and discuss that possible aspect with the physio.

Good luck!

[lynne99 in reply to PMRpro]

Thank you both. I will do exactly as you say and hope I stop falling over soon. I will go to physio and talk to her, I'm sure she will understand. Thanks again

[Celtic PMRGCAuk volunteer]

Lynne, Poor you - having PMR once is quite enough! However, we are in touch with another couple of people who have been through it for the second time and have come out the other end, so don't lose heart. As the starting dose for PMR is usually 15mg (at the most 20mg which is sometimes prescribed for those who are overweight), you shouldn't encounter problems reducing from 25 to 20mg.

Some patients with PMR do find that their balance is affected - I fell several times during the early days of treatment, mostly because with just a slight trip, my stiff legs were unable to react to keep me upright, but it does improve as the steroids get to work!

Physiotherapy is contraindicated for PMR - only gentle massage, ultrasound and heat treatment is advised. The headaches would be my main concern when suffering from PMR, as they can be a symptom of the linked condition, GCA, which needs a higher starting dose of steroids to get control. If the headache is continuous, perhaps you will be lucky and find that it is relieved from just the 25mg starting dose. But remain alert for any problems with your vision, and seek immediate advice if you feel concerned in that direction. I do hope you feel better soon.

[lynne99]

Thanks Celtic, I will take your advice on board and be aware of other symptoms.

[fuzzybear]

Hello, Would you please tell me what was the problem with having diabetes and taking steroids. I have both and no-one has ever suggested that there is a link or that you can't take steroids if you have diabetes.

[Hidden in reply to fuzzybear]

I have both and when I was first diagnosed with pmr I was worried I would end up injecting insulin but the doctor seemed not bothered so I bought a blood testing kit on Amazon and started taking a little bit more care. I am retired and had got a bit sloppy. My doctor won't prescribe test strips. The NHS ones are too expensive out of a pension. I think I have managed quite well, lost a bit of weight too.

[PMRpro Ambassador in reply to fuzzybear]

Pred can cause pre-diabetes and even diabetes because of the way it changes how our body metabolises carbohydrates. That is what causes some of the weight gain and in some people also leads to raised or, in diabetics, less controllable blood sugar levels. Some doctors panic and say the patient must stop the pred, others ignore it altogether. Both are wrong.

If you have high blood sugars it doesn't matter WHY, it needs to be managed. If your body is wallowing in a bath of too much sugar it causes damage to blood vessels and organs which is why there are ideal blood sugar levels which don't cause that damage. By far and away the simplest way to do that is to reduce the amount of carbohydrate you eat, particularly sugars which cause a spike in blood sugar whether you are diabetic or not. Less sugars means less insulin is needed to combat the blood sugar levels.

If reducing the carbs doesn't work then there are medications to help but they can also cause weight gain themselves. And of course it needs your doctor to be sensible and provide them - and also provide information for you so you can adjust your diet to manage it all properly. Some doctors refuse to hand out testing strips - which is stupid because only by using them for a while can you be sure your diet is working to keep your blood sugar in the right range. The so-called healthy diet still includes quite large amounts of carbs and you have to learn which trigger YOUR blood sugar rise and which improve the situation. And which foods you can eat with no problems.

As a by-product, quite a few ladies have avoided weight gain with pred and some have even lost weight by eating a low carb diet (not a NO carb, LOW carb). I have lost 38lbs so far by reducing my carb intake drastically - almost no bread and no rice, potatoes, pasta, cakes, snack bars, biscuits and so on. They are all a very rare treat. If I go out for a meal and there is a super dessert then I have it - but that isn't a daily or even a weekly thing! I eat meat, fish, cheese, eggs and salad or veggies (grown above ground other than carrots). I'm never desperately hungry and eat quite small portions with no problem. That is a common result of low carb - no cravings and hunger pangs that send you to the frig or biscuit jar.

[lynne99]

Hi all,

When I was first diagnosed with PMR, I was not diabetic. I was after a long time put on Pred, a large dose 30 mg+, and methotrexate. My ESR was up to 100+. To cut along story short, I was diagnosed with diabetes when the dose had gone down to about 6mg. There was no diabetes in the family. My rheumy told me to stop the steroids and carry on with naproxen. I took these for years , but eventually the PMR subsided. I have had a few minor aches, treated with naproxen. This time it is a major recurrence. Had a blood test and my Dr rang me to say the pred was at reception. (I'd put a sad face here but don't know how to.) I control my diabetes with tablets and insulin and am worried that the pred will make it worse. It is mentioned on the paper in with the tablets that Pred can cause diabetes.

It was so long ago , that not as much was known about PMR except it was autoimmune. There was no support network like this. It is brilliant, Thanks

[lynne99 in reply to lynne99]

Hi, again. Hope you are all feeling OK.

I went to my physio appointment this morning and told her what my GP had said. My arms still ache a bit in the morning but my headache and pain in the neck (ha ha) have reduced. The pain was only in the left side of my neck and I put it down to Arthritis. What do you think? Is it likely to be my PMR again or just arthritis. I,m on 25 mg of pred. Shall I stop the pred and see?