HELP NEEDED PLEASE

[JEMOK]

Some advice needed please. I had an ACLASTA infusion for osteoporosis on the advice of my rheumatologist on 24th January & now have a flare affecting my intercostal muscles & buttocks & am unable to walk or cough. I am presently on 11 mg pred tapering towards 10 mg & am wondering if I should increase my pred to get me through this flare. If so by how much & for how long. Thank you so much again for a your help & advice. Jemma

[PMRpro Ambassador]

For anyone else looking in - Aclasta is risendronic acid/risendronate, a bisphosphonate.

I think there are two possibilities: less than 11mg isn't quite enough for you anyway and it is the taper. The other is that the bisphosphonate is causing the problem.

drugs.com/sfx/aclasta-side-...

Whether more pred will deal with muscle aches due to the Aclasta I don't know. It is a good reason for not combining two changes at the same time!

It's funny - there seem to be a lot of people with muscle pain in the lower back and bum recently. What have you all been up to?

[Longtimer in reply to PMRpro]

You are right, I'm one of them...never had pain like it....I wonder what is going on??....mSo desperate, trying Amiltriptilyne tonight!...can't blame a biophosphonate though.....

[PMRpro Ambassador in reply to Longtimer]

I say "you" - me too!!! I feel like i did early days PMR. Not happy!!!

[Longtimer in reply to PMRpro]

Exactly, I said to OH earlier I feel like I did 10 years ago when first diagnosed with PMR......he said but you're not supposed to have it now, but I think with stress of him being ill may have triggered it again...If Amiltriptyline dosen' help will be to ringing Max next week

Are you upping pre d for a while to get you back on track.....wherever that is!

[PMRpro Ambassador in reply to Longtimer]

Only in that I have gone back on the taper I was aiming at, assuming that I've just overshot after all. That OH being ill/dying was a massive kick at the PMR seemed fair enough. That what I had to do last week plus the cold would be so bad never occurred to me. Still, I'm over 5mg lower than in the autumn.

[Longtimer in reply to PMRpro]

Yes it's amazing what can suddenly hit us....it's been a few weeks dealing with OH's problem, but when it hit on Sunday....has escalated to such a degree....Took an Amiltriptyline at 7ish last night, in bed sleeping at 9.30!....woke up about 1ish with burning in chest, silly me, should have had some yoghurt with it..usually does the trick...feel a bit groggy (added to the fatigue)...but will keep on with it for a few days...if it helps with the pain, and allows me to eventually lower, that will be go od.....

When the major things are sorted for you, hopefully you can visit family later in the year...

PMR doesn't like upsets in life does it!......

[JEMOK in reply to PMRpro]

As I am unable to walk & am in so much pain this evening do you think it would be ok if I take an extra 5mg this evening & increase my dose from 11mg to 15 mg from tomorrow?

[PMRpro Ambassador in reply to JEMOK]

I really do think you need to speak to your doctors though - it could well be something else, it isn't always PMR.

[Mazwendy in reply to PMRpro]

Hi there maybe just co- incidence but I am sure since I have had my Covid jabs I have had terrible trouble with my lower back and pain radiating to lower rib area I have had xrays which show mild osteoporosis and osteoarthritis which my Rhumy knows about. But I am sure as it passes and then I have another vaccination I get the same symptons?? had four jabs now so hopefully won't need anymore.

[Nextoneplease]

Hi Jemok, sorry to hear you are in so much pain. Yes, I would think it would be okay to take 5mg tonight and 15mg tomorrow. See how you go, and if this helps. I wouldn’t take it for more than a week without getting medical advice, especially as it appears the flare has been brought on by a medical treatment.

Hopefully the extra dose will deal with this flare and you can drop back down within a week to ten days, to 11 or 12mg.

Hope your pain reduces soon and that you get some rest. All the best to you x

[JEMOK in reply to Nextoneplease]

Thank you so much for your reply & advice Nextoneplease 😊 I have taken 15mg this morning & have everything crossed that it will give me some relief from the relentless pain 😖 Jem xx

[Pixix]

Joining in as I’ve never been in such pain..still think I may have sciatica, but have an appointment booked with my doctor, as I don’t think it’s pmr related. I doubled my amitryptylline but it hasn’t worked. It may be me, but many posts recently seem to be connected with this sort of trouble…could it be cooler temperatures in winter? I’m not increasing my pred as I feel it’s unrelated, but if you do & it works, please can you post about it. Sometimes I can hardly walk, & the nights are dreadful!! Good luck if you’re going to increase pred, I hope it works…& look at recent posts, or search on back pain, hips, & you will f8nd a wealth of info & posts!

[PMRpro Ambassador in reply to Pixix]

Mine certainly kicked in last week after getting VERY chilled on a foggy (what's that?) and cold (-4C and no sun) day and having to walk from station to middle of the town and then to PO in one direction, newsagent kiosk in another and back to the Court Office and then on to the Notary's office in yet another direction. And then back to the station and home.

Maybe I should have got into the shower as soon as I got home - it took me ages to warm up. It was much longer than usual on my feet and I walked possibly double my usual distance.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes to hot shower...I always get in one when I get back from Pilates, not because I'm sweaty but to ward off any lumbar pain ... seems to work.

[Longtimer in reply to PMRpro]

Perhaps they need to do research on how cold affects us!!I know here even before announcements about heating bills rising, many shops ect haven't been having the heat on....someone I know says she has a small hot water bottle under her jumper at work!!

[Pixix in reply to PMRpro]

Quite agree, foggy & cold are dreadful for it! Almost instant disapproval! That sounds like lots of walking around in it! Walking like that has a worse effect on my back & hip issues than going for a walk in the countryside! I used to find shopping trips bad for pain, as it includes standing still a lot as well as walking. I would have had a shower or wrapped up in heat pad & blanket, tbh. Heat definitely helps. One of the reasons I think mine may be OA instead of/as well as sciatica is that the rheumy warned me that as I tapered off the pred, so new to me OA could become apparent as it was masked by the pred. My thumbs are far worse since I made it down to 4mg from 5mg, very slowly via 4.5mg, I hasten to add! Trouble is that I realise you have all these lousy admin things to do right now & have to go to all those places. Hope that ends soon & you can relax a little! Hugs, S xx

[PMRpro Ambassador in reply to Pixix]

I think I am about done - and I must sort my own will out in the summer when it is warm, just in case. All it would have needed was a German version done at the same time - in ordinary German saying the same thing and signed by him. As it was it involved Italian bureaucrats (they were at least locals and German-speaking) and signatures and charges. Only 16 euros but that would have been a meal out!!! Apparently wills here are normally just hand written, no witnesses, nothing. The notary could have told us that at the time in 2013!!!

[Pixix in reply to PMRpro]

That's excellent news, phew! We sorted out our Will when we moved here about 8 years ago, it suddenly seemed a good time to do it. How sad that it could have been so much simpler for you. My Italian friends do moan about the bureaucracy and charges of that sort of thing. Really behind at times, too...hand written Wills were, I thought, a thing of the past, but not illegal in any country, I think each individual has a right...but then I think it must be witnessed here. When you think, though, of some of the tiny villages with elderly people living in them in Italy - living the exact same life they have all their life...you could set your clocks by them...hear the saucepan rattling at noon when the church bells strike etc. It's a part of the charm for me. Elderly ladies in black, making their way very slowly up 4 flights of stairs, the washing drying over the tiny streets, the three wheeled ancient vehicles...all of it...I love it all. All for now, S x

[PMRpro Ambassador in reply to Pixix]

Not as Italian here of course - and rather more disciplined! Mostly ... And the local resent the Italian legal guff but it can be very good.

[Pixix in reply to PMRpro]

Absolutely. I felt that ‘difference’ in Merano, but, a big but, it IS still Italy, regarding rules & regs etc!

[PMRpro Ambassador in reply to Pixix]

Meran is VERY Italian

[Pixix in reply to PMRpro]

Interesting mix…people in supermarket talked Italian, people who owned hotels spoke German.

[PMRpro Ambassador in reply to Pixix]

Bit like here can be - Big Spar on the village industrial estate had a local guy as manager until he retired about 4 years ago. He was replaced by an Italian - who doesn't speak German. There is a shortage of local people wanting to work there, so they bring in Italians from the south. The stocking policy has also changed. Much more Italian. Which has some pluses but probably more minuses. But we have MPreis which is unapologetically Austrian really. And the Conad in the village is aimed at the village customers! Which I go to depends on what I need - and I use all 3! Big Spar is superb for veggies - as much as possible Italian sourced. And THAT is definitely a plus.

[Pixix in reply to PMRpro]

Yes! I was at the deli counter, thinking they would want me to speak German…but they didn’t understand me! Big Spar. Then on the way back to our apartment we bought an ice cream…& she didn’t understand Italian!! Family gelateria…what?! It was very interesting, though, & I do understand what you’re saying, but only through experience! I didn’t anticipate a mix of language!!

[PMRpro Ambassador in reply to Pixix]

German is an official language - and then there is Ladin as well! But officially you won't get a job unless you speak both and you won't last long in hospitality if you don't manage in both! However - I get very stroppy if they can't speak to me in German - 95% of residents in our valley identify as German and the majority of our tourists are German speakers. I have been known to discuss medical stuff in English - once I had to translate what the doctor was saying for the nurse. Who was supposed to be the interpreter It was very funny actually and we were killing ourselves laughing. They are short of doctors - so we get Italian speakers who are supposed to be learning German ...

[Pixix in reply to PMRpro]

That’s funny! Most of the tourists were German…whether from Austria or Germany etc, but most cars we saw around had Germany plates! I think the girls in the Spar spoke both languages, but were just being a bit difficult…you coukd have heard a pin drop, when I changed from German to Italian…& then spoke English to David…had excellent service after that!

[PMRpro Ambassador in reply to Pixix]

Ah - as far as the Germans are concerned, South Tirol and Lake Garda belong to them so their attitude is a bit proprietary at times! Doesn't always endear them to the locals when they assume everything should be in German for their benefit - I remember one getting VERY stroppy in a restaurant in Lazise because the menu was only in Italian and English - how very dare they!!!! And they don't speak Italian - so you proved you weren't a German tourist Meran is very Italian - here isn't though so I do feel solidarity with my neighbours. The whole history since the end of WW1 really does explain the bitterness. Unless you are Italian of course ...

[Pixix in reply to PMRpro]

I think the history of the area is fascinating. I love the mix of people, & the fact it’s so different from the rest of Italy!

[PMRpro Ambassador in reply to Pixix]

It has the best of Italian and the best of Germanic things in general - food, wine, attitudesm even weather. I love it. They are a fascinating mix of being proud of their heritage and open to outsiders though that is because they know their livelihoods depend on them!! Terrifically international - did you know ALL the snow and ice needs for the Beijing Olympics derive from companies here?

[Noosat in reply to PMRpro]

I have really enjoyed reading this exchange of information about languages etc. Until the virus occured I regularly visited south American or central American countries each year. I found my spanish was not always understood and vice versa. Each country has its own "modismos." Argentinian Spanish very different to Ecuadorean Spanish and so on Of course in Argentina and Chile there are large communities of Germans and Italians. We certainly live in a multilingual society. If the pandemic had not come when it did, I had planned on a trip to Portugal, perhaps next year

[Pixix in reply to Noosat]

Glad you enjoyed it, I felt our discussion had taken over a bit! We were due to go to Porto in Portugal last year…scuppered by Covid, & a 3 weeks Northern California independent trip through national parks for our Ruby wedding anniversary..also cancelled!

[Pixix in reply to PMRpro]

That’s amazing re ice & snow, no, I didn’t know, though I knew the whole lot is artificial & it’s very icy conditions out there. I think it’s better to have it in a country where the snow is natural, really! Talking while out today…dolomites & aosta valley, or Syracuse on Sicily. Can’t get much further apart in Italy, both have fascinating histories. We visited the Taormina area of Sicily two years ago, loved it. Yes, the area of Meran was very friendly. S x

[PMRpro Ambassador in reply to Pixix]

Not actually that ICY as such - and the racing conditions are normally sheet ice by Joe Public's standards anyway, you can't stand on it! - but what they call aggressive snow. Most years all the local ski pistes here have a certain amount of artificial and some years entirely in the early season - and if there has been a small amount of natural snow and it all looks white round about, Joe Public couldn't tell what they are skiing on! Austria used to boast how THEY had "real" snow but technology now makes fantastic stuff and Austria uses it too - because their natural stuff is very unreliable and it melts more easily when it warms up. Once it has been prepared and softened in the sun and prepared and softened a few dozen times it is a very different product from the fluffy white snowflakes of fairy tales.

[Pixix in reply to PMRpro]

Maybe not…I could hear the skis chattering like they do on icy stretches, or they did when I was younger! Aggressive snow…I love that! I love watching the snowcats in the dark driving up & down the mountains…oh, I do miss it all so much! S x PS we better stop now, not supposed to chat like this in open forum, that PMR Pro lady will tell us off!

[PMRpro Ambassador in reply to Pixix]

One of the joys of getting Austrian TV is they take their ski racing very seriously and we get a tour of any race piste with them pointing out how hard a good one is so it doesn't disintegrate with the racers.

[Pixix in reply to PMRpro]

That’s fun…& interesting, too!

[Noosat in reply to Pixix]

I alas have had more pain in lower bacjk and very stiff legs. However, I am staying on my 3-5 tapering to 3mg as I had a lot of extra stress in the last few months and. this will pass eventually. I am just taking heavy dose of Tylenol during day and occsionally half aa zanax tablet at night. Trying to stay positive during these days of having to stay in house because of weather and covid is difficult and depressing. I'm trying to be grateful for the little things such as my vision passed the test for driving renewal and in the late afternoon it is nice enough to go out on the deck with Lily and a small glass of wine . Hope all proceeds well for everyone and problems are solved

[Pixix in reply to Noosat]

You’re right! You need to look for the positives, & eyesight to drive us a huge plus! I lost my licence on medical grounds once…for 9 months…truly horrible, took away so much independence. I have lower back pain, too, I have a haemangioma on my lower spine. The weather, winter & Covid are grinding on so slowly! Here in south of England we had the first sun yesterday, for 30 minutes that had a bit of warmth to sit in, gorgeous! Out on the deck…then I heard next door friend & puppy were out, so went through the gate & sat in her garden & played with Crumble, her puppy, it was lovely! Take small pleasures atm, that’s important! S x

[Noosat in reply to Pixix]

glad you had that pleasure. I've just come in from the deck I filled the bird feeders then Lily and I sat and watched them enjoy. Nice to get out after being iced in for days. Love the sun, but because of eye drops I have to use for elevated pressure cannot stay out long. My daughter and her dog will be visiting soon. We will go out on deck and em joy the cooling evening, while thr dogs play. Life could be a lot worse.

[Pixix in reply to Noosat]

Good for you, that’s definitely the spirit needed to get through it all! It’s frozen heavily overnight here, all is white, but we will venture into the forest…there are 5,000 ponies & donkeys free ranging there, on the roads, the heaths & in the woods. It’s a fun place to go, & lots of animals to see!

New Forest ponies, a very hardy breed!

[Noosat]

this process was recommended by my current GP I declined treatment after researching sites such as Mayo Clinic. I think it would aggravate some minor problems I already have.