I’ve been suffering lately with really painful hips and shoulders and a new condition of swollen and painful hands. I was on 11mg of pred and my CRP was 29. I increased the pred back to 15mg and feel so much better with hip shoulder and hand pain all so much better, CRP now 5. Unfortunately the PHN (post herpetic neuralgia) is not getting any better and the nerve pain around my right eye and forehead is doing my head in at times😫 The rheumatology department suggested to my GP that I trial leflunomide, they obviously didn’t check their records as they would have seen I had trialled it and it was not successful! So I’m left with being on what I think is a high level of steroids with the side effects. Add to the steroids the Pregablin and Amitripyline I’m particularly struggling with weight gain and thinning skin.
Yet another update: I’ve been suffering lately with... - PMRGCAuk
Yet another update
Oh Griggser, I do feel for you, it’s never ending. However, jolly good that you have upped your dose of Pred and it seems to be relieving you of some of your pain which will be a blessing. Your PHM pain sounds absolutely dire and you’ve had it such a long time. I looked it up and think on the NHS site it suggests something called Carbamazapine ( I may have got that totally wrong) which apparently does something in interrupting the pain pathways. Has that been mentioned to you? Of course it may not be good with other medications. Also don’t know if we have any pain clinics down here and not sure what they do anyway. But it would be so helpful wouldn’t it if someone could help you with this ghastly pain. Not to mention everything else you are having to try and cope with.
I have upped my dose this morning on reading that you have done this, to 13 from 12 as I have been putting up with pain, you just endure it really which is so stupid. However, also as you say, it’s the bad side effects which are hard to deal with. In a cleft stick really.
The surgery have put me on an. NHS programme at the surgery run by two lovely physio ladies who are trying to get me more mobile. Unfortunately I have had more flaring and been unable to do the minimum of a 10 minute walk.
Also, yesterday Slowdown mentioned an NHS thing called Silver Cloud which is based on CBT for a number of slightly different things. She found it be be incredibly helpful. So I have signed up for the one on Chronic pain. There are others. It had been suggested to me by the surgery to try a digitised eating plan. I have tried to do it but it’s too complicated for me. I mostly do all our food and it’s mostly low carb, however, then I get the “ munchies” so, that’s no good, which of course I know!
Apparently there is a diabetic department at our surgery, had no idea about that! I have now been left to my own devices until 3 months time when it was suggested I go in for an early morning blood test having not eaten anything since the night before. No idea what that’s about. But I was hoping for some kind of checking on how things are going.
Sorry, Griggser, am now rambling! Definitely thinking of you and wishing you get some better relief from your facial pain which you so need.
Hi Liz, thanks gif your reply and good wishes. It seems we’re a right pair😂😂I was referred to the pain clinic at Treliske and was seen by a very caring doctor. They tried Carbamazepine, duloxetine, gabapentin and a stellate ganglion block. Unfortunately none of these were successful.
I hope you get some relief with the physio people, I found them excellent at the surgery.
I did lose a lot of weight when I went on a strict low carb diet but have put it all back on and some! I just can’t get back into that zone where I’m really good and I also love to bake. Sourdough is my latest passion and of course cakes and biscuits whenever we get visitors which is quite often living in Cornwall 🏖
Sorry to hear this - nothing constructive to add, but just sending best wishes…you are going/have been going through a lot recently.
Many thanks, it does help when I read messages like yours😃
Sincere commiserations. Only Pred has ever worked for me but it’s hurting my long term health and well-being. Stuck!
Thanks for the commiserations, and I send mine to you. It’s so frustrating to be so far along the PMR journey but seemingly stuck on a high pred dose.
Sorry to hear that - but if it helps 15mg is what I have been at for the last 3 years while OH was ill and then to cope with the flare of the last 6 months. In fact I was up to nearly 20mg to be able to function. I haven't disintegrated yet. I'm overweight - always have been - but with cutting carbs a lot it hasn't been too bad. I haven't really gained weight - but I could be more conscientious I admit. But reduced pain and being able to function have been my personal priorities. Another doctor got all iffy about cholesterol and being stupid I gave in for a quiet life - result, PMR flare and (I suspect) the achilles problem that is making life very difficult ...
Is it possible to try lidocaine/lignocaine for the PHN?
Hi, many thanks for reply and hearing that you’ve been on higher doses to get you through some rough times does resonate with me. Reduced pain and able to function seems worth the price of the side effects and to a degree we can have control of things like weight gain. However I can’t get motivated enough to get back on that low carb wagon. I have not had any alcohol for a couple of weeks but that’s the same time as I upped the pred so not sure if it’s helped or not.
I did use lidocaine patches in the beginning but the nerve pain changed, I thought it was repairing slowly but it just changed the sensation and the area was more around the eye, into the corner of the nose and eyebrow. When I used the lidocaine patches it was more along my forehead and the area around my eye.
Wishing your Achilles pain eases and allows to move around more freely.
Do you protect your skin with anything ? A really good plain cream helps with its flexibility and prevents as many cuts , something unisex like Epaderm lotion , you can get big bottles of it on prescription or over the counter.
If you get the purple topped one you can also use it in the shower as a cleanser.
There is also a really good ( and cheap ) soap made of natural ingredients called Dudu Osan ( I hope I spelt that right!) It's an African Black Soap, gets rid of the dry skin cells and leaves the skin soft . It's recommended for people with eczema and psoriasis.
It is unisex , it has a mild citrusy smell and it can be used to wash hair too. I buy it from Amazon , about £1.50 a bar. It's my go to soap and I recommended to my friend's husband who has eczema and he swears by it now.
Wear thick socks , and gloves if you are doing any work , and put some lotion on your feet and ankles , or your hands before and after putting the clothing or shoes on , it helps stop the rubbing.
Smear Vaseline over a cut or graze if you are going to do something involving water .
Otherwise try and get air to your skin or any cuts and spots when you can .
Protect your skin , including your head with good sunscreen 50+.
Drinking the full recommended amount of water a day improves your skin and eye pain ( 2.5-3 litres) , it can be in tea!
You can be internally dehydrated even if you aren't thirsty and this does add to your pain.
Taking a full vitamin and mineral supplement every day , with or after the fattiest meal you eat to aid absorption helps skin and eyes , as well as neuropathy.
Extra Vitamin D also helps improve skin and body healing.
I actually found that Amitriptyline made my eye and migraine pain worse , it's different for everyone , but it's just a suggestion. It also gave me insomnia which isn't great for eye pain or neuropathy. Sleep is good.
Most people put on upto a stone with steroids and some other medications. Even if you go on a diet upto half a stone of it can hang around until after you stop steroids.
Getting on a low carb , low sugar Mediterranean style diet and watching your portion control helps to manage it.
Well thank you Blearyeyed for taking the time to write all that information. I use E45 cream on my hands and arms, that where I get the grazed and skin rubbing off. I try to remember to wear my cut resistant sleeves and I wear gloves when doing most jobs. I nearly always have a hat on when outside and wear prescription sunglasses practically all day, inside and outside. I’m certainly not good at drinking water but enjoy tea and coffee along with a glass of kombucha every day. I do take a vit D supplement as well as the Adcal I have on prescription. Sleep has greatly improved since being on Amitripyline. We do eat healthily in the main but have recently slipped back into having biscuits and cake. I’m just not in a good enough place to stick to low carb. We’re trying to move house to be closer to family and the market is proving to be very challenging! I’m going to look up the soap you recommend and give it a go.
No wonder you aren't up to dieting , moving house is very stressful. Probably a two puddings a day crisis situation. Plus you are in Cornwall in summer all those scones and clotted cream!!!Just try smaller portions for the moment it might help a bit and take care to pace yourself Moving Stress will trigger all sorts of extra pain .
Try sudocrem when you have cuts or grazes. It is antiseptic and resistant to water. It has succeeded where all else has failed on breaks in my skin. As a gardener I use it a lot..
Hi Griggser, I'm so sorry to hear your trouble following the Shingles is still hanging around and causing you distress but to add to that you have developed additional symptoms on your hands.I developed swollen and painful hands just prior to Christmas and finally visited my GP in April. Following a blood test that marked up RA I luckily was into see a Rheumatologist within the month where Ultra sound scans plus a through medical was undertaken and the RA diagnosis confirmed.
I'm now on Hydroxychloroquine and 5mgs of Preds to help with the inflammation until the drug fully works.
Maybe you should request a RA blood test from your GP just to confirm or not whether you've developed RA in your hands.
All the best, Tina.
Thanks Tina and I hope you get some relief with the drug combination, that mix didn’t work for me. The pain in my hands has drastically reduced since I went from 11mg to 15mg of pred.
Hi Griggser, I'm sorry to hear you're suffering so much. I am pretty ignorant about PHN but a friend had trigeminal neuralgia and found CBD oil to be the only thing that helped. Maybe worth a try?
Hi Griggser - just a quick note to say Hi & am so sorry about how it’s going at the moment for you.
Just doing my last minute packing - so will reply more fully when l get chance.
We’ve been in France for a week but back on Nana & Grandpa Duty tomorrow……
Just want to say how sorry l am about how things are going for you.
Regards to your wife also.
MrsN
Many thanks, safe journey😃 ✈️
Hi Griggser
We’ve landed!
Have you seen a Pain Management Specialist? I really think that this may benefit you - they are usually Consultant Anaesthetist’s. I imagine waiting to see one on the NHS will be forever, so maybe time to consider seeing one Privately, it’d be worth ringing your local private hospital to see if they have a PMS & what their waiting time is like.
They use Meds like Gabapentin & Amitriptyline along with conventional Pain Meds but also use antidepressants as some have relaxing & pain relieving qualities or they maybe able to do a nerve block?
The advantage of a PMS is their advice on WHEN & HOW to take Meds to achieve the optimum benefit.
The guy l saw was invaluable & it was he who actually diagnosed my PMR…
Best of Luck 🍀
MrsN
PS There’s also Acupuncture to consider & again a good PMS may even do this or can recommend one.
I’ve had major success with my Brachial Neuralgia…..
How I feel for you. You’ve been having a hell of a journey. I started Etanercept at the beginning of February after a big flare. My mum died in November and I was devastated which didn’t help my PMR. Strangely it was my hands that flared which I’d never had before either. Emergency rheumatologist appointment and a steroid injection in my hand sorted it out. I increased my steroids for a few weeks then dropped back. Since starting Etanercept I’ve been able to taper steadily which is the first time in my 6 years that’s happened. I have facial/jaw nerve pain as a result of a benign tumour around my auditory nerve which was treated by radiotherapy 4 years ago. This pain started about two years ago and was intermittent but now it’s pretty permanent. Tried amitryptaline but didn’t really work and am now on carbamazepine which I’m having success with. It’s not a pain that’s easy to live with so thank god I’ve found a drug which works for me. I do really feel for you as nerve pain around the face is difficult to live with. You’ve tried a huge array of drugs with limited success which is hard for you I really sympathise. As many have said quality of life is important so if you need a little more prednisolone just go for it! I’m off to look up that soap too. Good luck and I’ll be thinking of you from a much cooler Edinburgh.
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