PMR/Sciatica

[Mellow-Yellow]

I have had PMR since autumn 2016 and have been on 5mg for some time..I do try regularly to reduce ,so far unsuccessfuly..hopefully I will get there eventually.I also am Hypo thyroid.

In mid January this year I had Sciatica,and have been applying weekly Morphine pain patches.

Recently both my physio and I thought I was recovering really quite well.Then the pain and discomfort returned,particularly in the morning..I did wonder if I was having a PMR flare,it didn’t feel quite the same but I thought perhaps it was partly masked by the pain patches.

Coincidentally I had my routine blood tests,which confirmed my ESR levels were high. After doubling my Pred for a week ( and even then I had a niggle in my right buttock)I had a repeat test which I was told returned normal results.

I then reduced my Pred to my normal 5mg.

I haven’t replaced my pain patches,,it is pretty uncomfortable now,and If I cough or sneeze( hay fever) I feel it in the buttock..but not leg too this time as originally with sciatica.

I have taken things easily for three months now,just light pottering,but always a daily 30 minute walk to keep me as mobile as I can be at the moment,even with a stick.

My dilemma ..is it PMR or Sciatica ? I certainly feel confused and I am tempted to return to the pain patches,they were so helpful but I am a bit concerned about becoming hooked on them.

We have a weeks holiday planned in mid May..and I am keen to go,as much for my husband who has waited on me hand and foot for three months..We had to cancel a trip to see grandchildren in the USA in January as the Sciatica struck two days before the flight.

I really would value some advice please.

[Pixix]

I can’t give you advice on sciatica, sorry, everybody is different! But I can say that I’ve had it for 3 years now & battling it is hard. Im wondering if the days you notice a difference were cold, as the temperature affects my sciatica to quite a degree…it hates the cold (& it doesn’t have to be very cold!) I feel like I could forecast weather with it! Sciatica comes up quite frequently here, despite it being a PMR/GCA forum, you will see related posts now, & can search for sciatica to see others, if you wish. Hopefully your Dr will have input. I agree re morphine, but it’s a personal choice. I’ve changed to buprenorphine patches now,but haven’t been on them long enough to see if you can get addicted to them…but I guess you can! We ‘lost’ our holiday in January,& just had a lousy few days away in motorhome (dreadful weather, cold & pouring with rain)!

[Mellow-Yellow in reply to Pixix]

Thank you so much for replying ..I have to confess that I was in such discomfort this morning that I have stuck another pain patch on..which is like yours …buprenophine. I have had eleven so far,but no symptoms of addiction yet! I had Sciatica last year for eight ish weeks,I expect the addition of a PMR flare has thrown a spanner into the works this time.It actually was helpful writing it all down and reading it back.

I haven’t actually noticed the cold affecting it but will be aware.Thank you again and good luck with the pain patches..I find them a Godsend.😊

[Pixix in reply to Mellow-Yellow]

Buphrenorphine is an opiate, but it isn’t morphine! Also, depends on what dosage patch you are using as to what relief you get. I don’t have pain patches for sciatica. I do all the recommended stretches twice daily to improve sciatica, & I would not use patches for it. I have residual injuries from 4 car crashes, & suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration. That’s why I’ve just started using pain patches & time release Tramadol. To be honest, I was surprised when you said you had morphine patches, then buprenorphine, but thought you may have other things wrong (which is your business…just because I share my other ailments doesn’t mean ‘you’ have to!) The stretches twice daily, combined with heat pad & electric blanket, & exercise, shoukd be sufficient. If not, I’d go see your Dr & find out if there’s something else wrong!! I’m looking into extracorporeal shock wave therapy for my trochanteric bursitis, & thinking it may help, like PMRPro does! Have a lovely holiday! Don’t forget you mustn’t drink alcohol with the patches!

[Mellow-Yellow in reply to Pixix]

Oh Good Lord thank you Pixix for enlightening me..I am on the pain patches,because the other several painkillers prescribed were not effective for the pain/ but made me so dopey causing me to fall and trip easily,or had to be taken with omeprazole which I react to .

As a result of this my GP precribed the pain patches.

I do recommended stretches from my physio which I have found very helpful,and yes I use my electric blanket which is wonderful...I hope this flare has just put a temporary spanner in the works..

I do have an appt with my GP next week on a minor issue,( made 6 weeks ago!) but will definitely speak to her about the sciatica..To my knowledge I have nothing else going on.

Thankyou for taking such trouble with your replies and suggestions,and goodness me what a hill you have to climb yourself.

All good wishes.

[Pixix in reply to Mellow-Yellow]

Hopefully, all is well with you, & I understand why you are on the patches now. I react to omeprazole, too, & can’t take it, but Lansoprazole works very well for me indeed. Great that you have stretches & electric blanket…thisyear I bought a heated throw to use in 5he lounge in the evenings. My Raynauds has got worse recently so I look 100…thick sox, gloves, electric throw etc etc! Hope your appointment goes well!

[Mellow-Yellow in reply to Pixix]

Hello again Pixix..I react to Lansoprazole too,I sometimes think my body seems to consider every drug prescribed a terrific incentive to react against.!

Thankfully not the pain patches,..or as far as I’m aware!

Thank you for your good wishes so much appreciated.

[Pixix in reply to Mellow-Yellow]

Ha ha, a definite twin, then! It’s seldom i taje a drug & don’t get any side effects. But I’m starting to wonder what is causing my dreadful head sweats & night sweats. I used to get it on 15mg, but I’m down to 2mg & not tapering as per Dr’s wishes. Perhaps it’s the lansoprazole ! Though I think it’s the tablet I now take 16 of per day. Will have to come off something to find out….!

[Mellow-Yellow in reply to Pixix]

Ooh Lord isn’t this a frustrating situation? 16 tablets a day? Dear Heaven..the detective work we have to use at times is hard to believe.

I do sympathise with the sweats..my personal thermostat gave up many years ago,(unrelated to drugs) and I had years of generally being overheated during the day,I was never without a battery fan,and had nights of head and body sweats..I found relief in a huge fan on a stand in my bedroom which was at full strength winter and summer.It’s only in the last winter that it’s been on less! I had a late menopause,but my thermostat went twenty years before that.I also have a fan in the living room still in use and aimed at my head!!

Were you ever on Alendronic Acid? That resulted in the most extreme reaction I have ever had..the stuff of nightmares.

[Pixix in reply to Mellow-Yellow]

Oh yes, I gave A Acid a whirl…& it resulted in 7 infections in one tooth over 4 years & 6 dentists, including the hospital surgeon refusing to remove my tooth! Grrrrrgh! Finally had it removed 6 weeks ago. Nightmare, for sure! Oh, & that was actually Risenodrate as, like you, my body rejected A Acid!! I had an early menopause, hysterectomy late 30’s, medical issues!! S x

[PMRpro Ambassador in reply to Pixix]

That extraction all went OK I assume? No delayed problems?

[Pixix in reply to PMRpro]

It took 90 minutes, but the first 15 was a discussion about whether to go ahead! After that I nearly said forget it, & bolted! But I went for it. I was very bruised due to the nature of it, & under the tooth she found a heap of nasty looking troubles which she excavated & showed to me. Two lots of antibiotics later, & very careful,& it’s healing. She said it’s too early to tell if I’m in the clear, but that was due to the material she found & the fact she had to go right down to the jaw bone clearing it all…

Time will tell! Thanks for asking, S xx

[PMRpro Ambassador in reply to Pixix]

That's good - and sounds as if it was as well she did do it.

[Pixix in reply to PMRpro]

Yes, it appears there would have been ‘big heap trouble’ very soon!

[Mellow-Yellow in reply to Pixix]

Ooh no! ..This is like a horror story and I can only imagine it…just hope you are healing well at last.

I was also given Risedronate after AA,.however some time later I was diagnosed with Actinomycoses in my mouth ..a rare but pretty horrible infection.

Was this the infection you had? At the time I did research on line and there actually seemed to be a risk of this when taking buphosphonates.

I stopped taking them immediately,and told my GP at my next visit..her response was ‘ I don’t blame you at all’.My dentist still checks my mouth thoroughly on every visit..

Subsequently skeletal exrays showed excellent results. I had no need to be on the blessed things. Why on earth wouldn’t you arrange exrays for your patient before prescribing buphosphonates?

I certainly lost faith in my rheumy,and haven’t seen him since.

[PMRpro Ambassador in reply to Mellow-Yellow]

Plain x-rays won't show low bone density - unless it is VERY low. You would have to lose up to 30 to 50% of bone mass before it shows on x-ray. A spinal x-ray might show fractures that suggests low bone density.

[Mellow-Yellow in reply to PMRpro]

I have just unearthed my paperwork from several years ago..it was in fact a DEXA scan to check Bone density.

[Pixix in reply to Mellow-Yellow]

PMR Pro has explained why!! I don’t, & never have, seen a rheumy for PMR. I don’t need to. With this forum & a Dr I have no need. Having 7 infections in the same tooth was horrendous & ruined a few days in Italy on hols, too. I was lucky & have anew dentist who helped find somebody willing to do the extraction…but she wasn’t willing to do it herself! She just said that infections can be really dangerous & could result in sepsis etc etc.

[Mellow-Yellow in reply to Pixix]

Well I certainly haven’t seen a rheumy since..having initially been referred to one by my GP.

I think like most followers of this forum,I rely on advice here ..it’s the place to go!

It reads as if you have at last had the dental treatment you so needed after your ghastly experience.Sending all good luck for a successful recovery.

[Pixix in reply to Mellow-Yellow]

Thanks, & yes, I have! After so many years, I am finally m8nus one tooth…& hoping I won’t ever know what necrosis of the jaw is like! S x

[PMRpro Ambassador]

Have you also done stretches for the various muscles that can be involved in sciatic problems and buttock pain? The local rehab rheumy is adamant that makes for a far better recovery.

I have a problem with the sacroiliac joint which also sometimes is accompanied by buttock muscle aches. I also have GTPS (greater trochanteric pain syndrome) and am currently having another series of extracorporeal shock wave therapy and that seems to be doing something for the whole low back "thing" - I don't think it is coincidence.

In your place, I would use the morphine patches sparingly to allow something like your holiday. I have never been offered them but I have used lignocaine patches which are great for that sort of thing when you MUST do something and are not sure if you can manage for pain.

[Mellow-Yellow in reply to PMRpro]

Thank you PMR pro..I think you were very helpful last year in suggesting my problem was likely to be Sciatica,you were correct and I was very grateful.

I’ve digested your comments and suggestions,yes I do stretches and have found them very helpful.

I’m seeing my very nice GP next week and will take the ( rare) opportunity to talk sciatica!

With many thanks again,this group is such a helpful place to turn to in times of anxiety,confusion and pain.You all do a fab job ..much appreciated.

[Zebedee44]

My goodness I am so with you ladies struggling with sciatica and highly responsive to new meds. My body seems to take offence at anything new in the mix. Hence my doctor has denied me any pain relief for the sciatica which is concentrated in my right buttock and lower right leg.

Months of sciatica preceded the diagnosis of my PMR back in 2016/17 and increasing quantities of strong meds did nothing for it so I was using fentanyl patches for a long time even after starting the prednisolone. I think I was frightened about giving them up and maybe I did become a bit addicted because I was still using them in 2018 alongside the pred, desperate not to return to the pathetic state I had been in before diagnosis.

This time around I am managing with paracetamol and occasionally Co-codamol and the stretching and strengthening exercises on YouTube but mighty fed up after three months to still be in such pain and now with gastric problems which might well relate to the pill popping. It’s all a big pain in the derrière, literally.

[Mellow-Yellow in reply to Zebedee44]

Thank you for replying …oh my word you poor thing ..I can’t believe you ‘ve been denied effective pain relief..how on earth are you functioning?

Like you I have had this latest bout of sciatica for three months and have found buphrenorphine so helpful.It took two or three days to kick in but the relief is indescribable.

If you haven’t tried it could you ask your GP to consider this? The strength on mine is 5 mg per hour .

The only experience I’ve had with Co- Codamol resulted in impacted bowels after knee surgery..I avoid it like the plague!

I am so sorry you are in such pain,and do hope you are able to persuade your GP to try something stronger.

[Zebedee44]

To be honest it has been the least of my worries after an MRI of my throat revealed an enlarged pituitary gland which might cause serious vision problems. The NHS has been superb and today I have had the all clear for now at least that my vision is unaffected.

The sciatica pain has settled to a manageable level but the throat problem has not and I am now struggling with heartburn and blocking of food in my throat. Lansoprazole isn’t doing much for me and I started famotodine yesterday. That combined with the inevitable constipation caused by Co-codamol has bunged me up and I have been referred for an urgent gastroscopy. So yet another thing to worry about and I am amazed that I am managing a taper to 5mg pred with all these things going on. If it’s not one thing it’s another with Poly!

[PMRpro Ambassador in reply to Zebedee44]

Do you not think leaving the taper for now might be a good idea!! All sounds a bit stressful ...

[Mellow-Yellow]

I am so sorry you have more challenges..however well done with your successful tapering,a real achievement against multiple odds.