I hope everyone is as well as can be expected? (Vain hope probably, but worth a try)!😉🤞Fingers also crossed for some nice bank holiday sunshine for everyone! (Cloudy here today).
I posted in February about how I'd very stupidly fallen down a couple of stairs and suffered a periprosthetic femur fracture. I'm now 18 weeks post-op, and it seems to be healing, albeit slowly. I'm still only partial weight bearing and trying (very slowly it seems), to progress from gutter frame to gutter type crutches. Next check-up due on 2nd June.
Just over a week ago, I spent 2 days at A&E after being advised to go by my rheumatologist following 11 days of severe back/rib pain which started (as it turns out by pure coincidence), a few hours after my 2nd covid vaccine. He was concerned it could be a blood clot on my lung. After various blood tests (inconclusive), a chest x-ray and a CT scan, I was told there was no blood clot. Unfortunately however, the CT scan did reveal a new T7 spinal compression fracture, and 3 old, healed rib fractures. I've had periods of rib pain over the years but just assumed it was RA. Obviously, not all of them were!
I have also had several stress fractures in my ankle (and many spells of being in plaster), prior to an ankle fusion in 2018, and one minor fracture in my pelvis.The fractures started to occur in about 2007. Unfortunately, these things are one of the big downsides of long-term steroid use and apparently, long-term severe RA. I take Adcal daily, and in the past have tried Actonel (Risedronate) and then Prolia (Denosumab) injections. Both were eventually stopped due to side effects and as my bone strength was then in the normal range, (it's never been particularly low), it was agreed I could have a break from treatment.
I saw my rheumatologist this Wednesday and he plans to get a new dexa scan. He'd also managed to arrange an MRI for 22nd June but unfortunately I'm due to have another minor op on the 21st June. This time on my "good" eye so I'm not sure what state I'll be in the next day! If it's blurry then I'll be in serious Mr Magoo territory as I'm blind in the other eye!! (Yes, RA again).🙄 I think the Rheumatologist is going to try and change the MRI date just to be on the safe side!
I think he's probably going to opt for a Zolendrate infusion for bone treatment. Has anyone had this, and if so, how was it - any nasty lingering side effects? He also mentioned the possibility of a small procedure called a Vertebroplasty (where you have cement injected into the fracture), to try and strengthen and stabilise the spine and relieve pain. I've got to wait for the results of the upcoming MRI to see if that's appropriate. Have any of you undergone a Vertebroplasty procedure? If so, was it worthwhile (and was it very painful)?
Has anyone else had an acute spontaneous compression fracture with no trauma? If so, how long before the pain recedes a little? I'm 3 weeks in now, and it's still very, very painful although I can mostly breathe a little bit easier. I'm taking 8 paracetamol and 8 tramadol per day without much relief and Oramorph through the night. The Rheumatologist recommended oramorph during the day too (4 hourly, but as often as hourly if necessary), but I'm really trying not to as I don't want to set off any tummy issues, etc. I am now 52 (in case that's relevant). This new fracture is definitely not related to my January fall, and my ankle fractures were always spontaneous with no trauma, but my ankle was quite deformed, which didn't help, and caused weakness.
Thanks so much for reading, and any advice or insights will be greatly appreciated.😊🤗
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Kags1068
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Doing ok best for a while .just waiting for something to trip me up ... pardon the phrase. It never lasts . Hope there’s something they can do for you. I have a vision of you in top to toe plaster being straw fed by a handsome doctor.. see what Gail has started 😂
Haha! Yes, I know what you mean about the tripping up! There always seems to be something else lurking just around the corner ......🙄 I hope you stay well though. 🤞
I think Gail's been getting lots of us a bit excited with her tales of dishy doctors! If I am to be straw fed, then I want to go in the same hospital as her, I've never encountered that number of easy on the eye medical staff!! Grrrr!!🙁😆
Haha! Yes, you hit the nail on the head there! There are definitely things you'd rather not know about as I'm sure most of us can attest to. 🙄Thank you for your supportive thoughts, it does cheer me up! X😊
Oh dear, you have gone through it and still are. I’m on long term steroids and my back is a mess. I have had osteoporosis for many years and am due my 3rd infusion of Zoledronic Acid in July, i have suffered side effect after having them, for a couple of months after, headaches and a general feeling of not being well. I really am not looking forward to going through it again, but it’s preferable to taking Alendronic Acid tablets weekly, which upsets my stomach. I have been on Prolia in the past and was ok with that, but it’s a risk when you stop. I can’t advise on Vertebroplasty as not had this. I also take 2 Calceos daily and vit K 2. We are all different so you may be ok on it. Sending the kindest wishes to you X
Thanks so much for your reply - it's extremely helpful. Funnily enough, my bone density has never been low enough to be diagnosed as Osteoporosis. I've only ever had osteopoenia (I've forgotten the term suddenly so I'm not sure if that's correct. It's basically the level before Osteoporosis). Even so, I continue to have the fractures.
Your comments about the zolendronic acid are very interesting and exactly why I asked about lingering side effects. What you describe sounds exactly like the side effects I had on prolia. Plus, the more injections I had, the worse it got. I would have a general feeling of being unwell, and it seemed to really make my bones ache. That's the only way I can think to describe it. It would last for 2-3 months too. By the time I was feeling better, it would nearly be time for the next one.
That's what I fear with the Zolendronic acid, but as you say, it may well not happen. I think you just get a bit wary.
I think Actonel is very similar to Alendronic acid. I had the same problem as you with that too. It really gave me a bad tummy and I'm usually fairly hardy with the drugs. I was so relieved to stop it.
Is there any reason why you switched from Prolia if you were ok with it? I have the adcal, but only once daily at present as my levels are very good! I've never had vit K.
I hope the treatments are working for you and you are managing to avoid these horrible fractures!!
Osteopenia is the stage before osteoporosis, as you rightly say. My sister and at least 4 friends, have been dx with this after breaking something after a fall, none have RD or been on steroids either. I’ve have surgery for various joint erosion, triple foot fusions on both feet. I did have fractures a couple of times because of instability on my ankles. My back problems started about 4 years ago and I have scoliosis and a tilted pelvis with many collapsed discs and stenosis, ironically no fractures in my spine, my osteoporosis seems to be in both hips, I dread falling on them. I was only allowed Prolia for 3 years the recommended course. The same for Zoledronic Acid this is my last one. I will then have a Dexa scan and maybe back to Prolia if needed. I’m now under the National Royal Orthopaedic Hospital for my back and waiting for a CT scan, I also need to consider if I want major surgery, plus my osteoporosis is a problem as may not be stable enough to go ahead. It’s all decisions as you know. Have you looked on the Bone Health forum, may help you to make up your mind and also maybe someone has had Vertebroplasty and can advise you on that. Take care x
Thanks for the tip about the bone Forum. Didn't know about that as this is the only social.media type site I've ever used!
Well, you've certainly been through the mill too (I'm sorry to hear). I hope the foot fusions helped. Like you, I've had a number of surgeries too (hip replacements when I was 19, one hip revision 5 years ago, knee replacements 15 years ago, foot surgeries, hand surgeries, C1-C2 neck fusion, op to plate and repair femur ...blah, blah - it goes on and on doesn't it?! Obviously in recent years they're a bit more complicated by the bone weakness business. I can absolutely understand why you are so worried about falling on your hips. I feel so.much more wary now after my recent fall. It's really hit my confidence.
I hope the Royal Orthopaedic are looking after you well? Is it major spinal surgery you are thinking about? We really have to make some tough decisions don't we? It's not always easy to know what's best.
Do you think you will have to keep flipping between prolia and zolendrate, or will you ever get a break? Probably a daft question!
Thanks so much for your really helpful advice. Best wishes xx
Goodness Kags, so many surgery’s, mine have been mostly feet and hands. I have replacement knuckles on my right hand and had a Carrol tendon transfer on my left, as well as other surgeries. Apart from the triple foot fusions, I’ve had minor ops on my feet. I need an ankle fusion, but that would mean 2 more foot ops after, so while I’m not in much pain with it, I’m leaving that. The back op is to straighten my spine, they feel any less surgery, will have a house of cards effect ! The pain is making me bend forward, I’m having home physio for that to try and build up my lower muscles as they are not supporting my spine. It just seems to go on, I’m sure you feel that too, but quite honestly you are a marvel to go through what you are having to put up with. I’ve had RD for 36 years, so a lot older than you, I was 40 when it hit me, after a hysterectomy. I was in my early thirties when I was dx with Hashimoto’s an immune thyroid condition. Despite all this I’ve had a good life with lots of support and a will to try and live with it. You lovely disposition shines through. Take lots of care.Hugs G X
Thank you, what kind words. Sounds like you've had your fair share of ops too! I've had a couple of tendon repair ops on my hands, but held off on the knuckle replacements eventhough they've been offered. Hope it worked well for you.
I understand you holding fire on the ankle fusion. I always try to hold off on ops until the pain gets to the point it's unbearable. Otherwise, you'd never get a break from them!!
Let's face it, whatever age we're diagnosed it's still crap isn't it? Your life suddenly changes, and you have no choice but to adapt. As you rightly say, you have to find a way you can live it. I'm really happy you feel you've still had a good life and you're well supported. That's obviously testament to your character too, in that you can still see the good in things. Not always easy. I also feel lucky that my hubby is very good and I have some lovely friends who have been with me from childhood and knew the me "before" too. My parents also help out a lot still, for which I'll be forever in their debt. I guess these are the things to cherish.
Dear Kags I read your previous post with the full details of your fall and the damage done, my word, so sorry I missed that post. You really are remarkable to have come through it with a sense of humour still. Your poor husband too. I live on my own, but have a partner, it suits us both, maybe me more so, I was married for a number of years, but my ex husband couldn’t cope when I first got RD, I was dx with lupus to begin with though. He left myself and our 2 teenage sons. I had to get on with life, my sister always has been my rock, our parents both died young with cancer, they were much loved. My sons their partners and 5 grandchildren are close. My true friends are there for me, as I am for them. So yes we are blessed in many ways, it’s just the other stuff 😳 my partner is having a big op Monday week and will stay with me after, I’m hoping I will be up to caring for him, this time, my mobility is quite an issue. Re my knuckle replacement, I had a failed tendon op on that hand many years before it had drifted right over, so when my Carrol tendon op on my left hand was a success I asked the surgeon to perform the replacement op on my right hand, when I came to have it done, unfortunately it was another surgeon and wasn’t quite as good, but I can at least use it, it’s been a few years and drifting more again. My RD is kept reasonable under control with Humira, which I note you are on too. I have degeneration in my right shoulder so I assume that’s OA, it’s just seeing if I can deal with this back pain. We shall see. Iv had enough of ops and getting older harder to get over. I still have a way to catch up with you, oops! not age, ops I mean. Bless you xx
Goodness, thanks for taking the time to read my previous post. Hope it didn't make you feel too sleepy.😆😆
I'm not very good at keeping things short no matter how hard I try!
Dear me, you've had some difficult times. I'm so sorry you lost your lovely parents so early. I honestly don't know what I'd do without mine. As for your ex, well, what can you say? I hope that overall you've been better off without him, although that's easy to say. Unfortunately he sounds like a weak, cowardly man. I guess you never know how someone will react to these things. I experienced that sort of thing (though to a much, much lesser degree) during my dating years! I never told anyone until or unless I hadto. I remember someone once telling my ex-boyfriend how brave he was for "going out with someone like me." That still hurts now! Silly, eh? I do have an older brother, but he estranged himself from the family about 30 years ago- we don't really know why, but I think it was at the behest of his wife. Broke my parents' heart. I'm so glad you have a close relationship with your children and grandchildren. That really is lovely and precious. I never had children. In large part due to the RA and never being stable enough to stop drugs, etc and the practicalities of how on earth would I cope, and also because I'm not very good with children! I'm better with animals! As such we have 2 spoilt cats.
I can completely understand why you prefer to keep your own space now rather than live with your partner. Personally, I couldn't imagine living with anyone else again. I hope his operation goes well and he recovers quickly. It's very difficult when you're put in the caring role though. You want to do it, but it's just so damn hard! I've done it a couple of times for my hubby and it's made me ill each time. Makes me feel terrible as he does so much for me daily - especially at the moment.
Regarding the tendon ops. I had one go well, and another that didn't. It really put me off. Unfortunately now, both sets I had repaired have gone again, plus a few others. I was offered knuckles, but never went through with it. I think something may have to be done at some point, but I'm not thinking about that one yet!!
I'm glad the Humira is working for you. Such a relief when we find something that does! I absolutely agree about the op thing. I find them harder to get over now too - probably because other joints are so damaged too, so struggle to take the strain? Who knows! I also find (don't know if you do too), that the more you have, the less you want to have to go through it again. Ultimately, we don't get much choice though.🙄😁
I hope you are having nice sunshine where you are. My hubby has actually managed to help me outside with my enormous gutter frame for the first time since January! The other few times I've got out (hosp appts) I've hadto have 2 glamorous assistants to help (dad and hubby)! So, I'll call that progress. I'm only sitting right outside our front door, but it's so nice to finally get some fresh air - hurrah!!😉😁
I’m smiling at your comment re the sunshine and sitting outside, it’s wonderful isn’t it, I hope you enjoyed and maybe didn’t stay too long in case of sunburn, or had a shady spot. My partner went to golf and I went to chair yoga, and later in the day we went for a bbq at my sister’s and BIL. My niece and nephew plus their spouse’s and both have one son each, were there also, has been so long since I’ve seen them, I so enjoyed, felt a lot more ‘normal’. Today I went shopping with my sister and some lunch out, only just started doing this again after shielding for so long. I have my food shopping delivery tomorrow, plus the gardener around lunchtime.
I love cats too and have always had them, after we lost my youngest sons cat, we shared her, about 4 years ago, I said I can’t go through that again, although in truth they would outlive me now. I have a lovely little black cat who lives over the back, she comes to visit me for a fuss. We have to make the best of life with this disease and all it friends, so you made the right decision for you and your husband, I had my children when I was ok, I can understand you keeping it to yourself when you were young, I did this also when I eventually started to date again. It took a long while to get over my ex husband leaving, plus I was very ill, I was in constant flares, he lost a lot of friends, as I think he believed they would sympathise with him. I eventually divorced him, I retrained and went into an insurance brokers and when the house was sold, I bought a house with the help of a mortgage and my settlement for myself and the boys and no regrets. Life with RD certainly isn’t an easy one, as you know only too well.
Karen I hope life get easier for you as recover from this awful accident. I will pm you and let you know how I am doing with my nursing !! My eldest granddaughter is a nurse, I may need some tips from her😳 All best wishes, Georgie xx
Thanks for the lovely reply. Sounds like you had a lovely couple of days with your family. So nice to hear that. Hope you get many more now things are settling down.
Your little cat friend sounds lovely. It is absolutely devastating when we lose them. My 2 boys are brothers. 1 pure black (Arthur), and 1 pure grey (Sonny). We adopted them at 2 and they're now 8. I'm constantly worried about anything happening to them, but you have to try and enjoy every day you get with them and not dwell too much.
You did a marvellous job rebuilding your life after your marriage. I'm sure it was very difficult, but worth it by the sounds of it.
I'm afraid I had a bit of disappointing news at my leg fracture check-up today. It has healed some more, but not enough as my bones are a bit soft and heal slowly. Therefore, another 6 weeks of partial weight bearing. It will be 25 weeks by then. I had a few tears of frustration, but I'm ok now and ready to plod on some more.
Please do message me and let me know how you get on being nurse. That would be lovely. If your partner misbehaves himself, you can always threaten him with a dose of laxatives - haha! Seriously, I hope his operation goes well and smoothly. Perhaps your granddaughter might fancy a few extra shifts at your place? 😉
I had 3 sessions of infusion with Zolendronic Acid, one each year for 3 years. I suffered no side effects. Now 2 years later I have asked if I can continue . However first I must have another Dexa Scan to see how my bones are. Good luck. Incidentally before the infusion you need a blood test to check your Calcium levels.
Oh ! thanks Qags for reminding me re the blood test, they won’t go ahead without. Have so much going on at the moment it had slipped my mind. It’s good to hear you were ok on Zolendronic, it proves how we all respond differently to the drugs. X
Haha! It's so hard to remember it all isn't it Gigi!!? As you say, really good to hear someone else has got on OK with the Zolendrate. Very re-assuring xx
Thanks very much Qags. Very useful info too. I'm glad you've managed to escape any side effects. I'm really pleased for you on that one! I hope it's strengthening your bones and you are avoiding the dreaded fractures as much as possible.
Thanks for the blood test reminder too. I used to have to do that prior to the prolia. My rheumatologist gave me a blood form last week with extra tests on it and I think that's on it. The blood people are coming out to visit me from the hosp next week (as I'm still effectively housebound atm), so at least it will be done quite promptly.
Again, thanks for replying and I hope you are as well as can be xx
Oh Kags I'm at a loss as to what to say other than if I had a big magic wand I would be wafting it over you right now. As I can't find one of those would some warm, positive and supportive vibes be ok? Take care xx
Haha - thanks so much Pip - waft away!!😁 You are always ready with a kind word or two, and it's lovely. Hope you are ok(ish), and that pesky knee is behaving xx
Thanks Kags, that pesky knee gets peskier by the minute I'm afraid! Still I will continue to search for that wand for us all, in the meantime keep your chin up and sending a very gentle hug xx
Oh dear - I'm so sorry it's getting peskier. If only these things would give us a break sometimes, eh? Please do keep looking for that wand. Have you tried Sooty? He always had one. 😁My chin(s) a bit heavy atm, but as always I'll do my best to keep it pointing upwards xx😉
Hi Kags. I'm so sorry to hear about your fracture and can appreciate the pain you are in as I had two wedge compression fractures to T4 & T5 at the same time but although I had osteoporosis at the time (and still have), it was due to a high impact fall. I had one intravenous infusion of Zolendronic Acid (having previously been on 3 monthly intravenous infusions of Pamidronate for seven years) and did have side effects from it which was mostly headaches, tiredness, muscle aches & pains and the most aggravating one was leg cramps which I'd never had before, but we are all different so as you know, what one gets another may not. At my next review, I told my consultant that I wanted a drug holiday and never had another one after that. As Gigi said, have a look on the Bone Health forum, there are some really experienced people on there and they seem like a really good group who are very understanding and knowledgeable and give really good advice. I wish you all the best Kags, you really have been through the mill haven't you. I've heard of vertebroplasty but don't have any info, sorry. Are you on Vit D Kags? 🤗🤗
Thanks for your lovely, helpful message. I'm really sorry you've had first hand experience- 2 fractures at same time! Agh! That must have been very painful. Can I ask whereabouts you felt the pain (if that doesn't sound too daft). I'm getting a sort of tight very painful band across that area of my back from left to right (more on left). It goes from a dull ache to a really powerful one at which point you start to feel a bit nauseous! The strange thing is, I've got a permanent strong pain round about my left ribs in the same area. Feels like someone has stuck a knife in and twists it every so often! That's more insistent than the band of pain across my back which sometimes settles a bit now. No matter how much I fidget, I cannot get comfy when that stabbing pain revs up. Sorry to be so boringly graphic, but was it anything similar (or possibly worse) for you? The Rheumatologist suggested the rib bit might be because 2 of the old rib fractures were on that side, so there may be ongoing weakness? Also, how long before the pain started to ease? I'm just a bit cheesed off as my leg recovery has gone to pot a bit atm as I'm not shuffling around enough!
Again, the Zolendrate side effects you had sound very similar to the prolia side effects I had, although that obviously doesn't mean I would get them with the zolendrate! Thankfully, I never got leg cramps. That's a new (and unpleasant) one. I can understand why you asked for a "holiday" from those drugs. That's why I did too!
Thanks also for the tip about the bone health group.
As for the vitamin D, I take the chewy Adcal/Calcichew and I'm not sure if that contains vitamin d too (Sorry, I'm nowhere near the packet to remind myself)! I did have my vitamin d levels checked recently in my bloods though, and they were very good!! Typical!
Aww Kags, I know what you're going through honestly but you have so much more going on that I had and I really feel for you. Mine were in between my shoulder blades one wedge compression fracture on top of another and I lost a few inches in height because of it with kyphoscoliosis as a result - my osteopath described it as looking like two wedges of cheese one on top of the other. Mine was right across the shoulder blade area like a wide band (like you say) right up to the top of my spine and a little way down towards the waist and when I stood up, it felt like I was going to fall forward as I felt that I couldn't support myself - I realise that sounds crazy but that's what it felt like, almost like I was going to fall in half. It was 17 years ago so I can't remember a lot about it apart from the extreme pain and trying to sleep was almost impossible.
I can’t say what’s causing the permanent strong pain in the left ribs but sounds like part and parcel of the compression fracture - you’ll know more once you’ve had the MRI Kags and I really hope they can get you in asap. I do remember that it affects the muscles in the area too - I used to get a clunk over my right shoulder blade area when I used to move my right arm and that was due to the changes in the muscles. The rheumatologist could be right about it being to do with the old rib fractures being on that side but that’s why you need the MRI asap to find out exactly what’s going on. My pain went on for many months but it was two wedge fractures which involved a drastic change in shape of my back with the kypho and all the muscles were affected too – with the help of my osteo I got great help (without manipulation or mobilisation). I was off work for six months.
I’m not sure about the Adcal/Calcichew containing Vit D but if yours is already very good then there’s no need to worry but please Kags, have a look at the Bone Health forum – I’m pretty sure you won’t regret it.
I really wish there was some way I could help you unfortunately it’s not possible but I’m thinking of you that’s for sure and wishing you all the best for a speedy recovery from this absolute nightmare you’re going through. 🤗🤗🤗🤗🤗🤗 xxxx
Wow SC - that sounds like it was very painful for you. Thanks for describing the pain you had, it's very useful (although it was horrible for you)! Thankfully as yet my height seems unchanged, and I'm very grateful I haven't had the feeling of being unable to support myself and falling forwards. That sounds horrible. Yes, it makes sense the muscles would be affected too. I get a lot of muscle pain in my back anyway (I'm waiting for some trigger point injections through the pain management clinic).
You have definitely helped me - just knowing that your pain radiated to different areas is very informative. Thanks. Obviously, as you say, the MRI should give a better picture. As the hosp were initially looking for blood clots, they did a CT scan instead. I'm just waiting to see if the MRI date can be changed from 22nd June. I'll wait and see.
I will have a look at the bone health forum too. Thanks so much for your kind thoughts and good wishes. I hope you are as ok as can be too xx😊😊
Hi, I don't have any advice sorry as I'm new to ra but had to reply to say wow you've been through it all. You still manage to hang in and stay positive and I admire that. Do you mind saying how long have you had ra, are you also sero positive and what your meds are? I can only hope that I would be as chirpy as you after all you've been through. I'm realising that for some this is a vile, cruel disease whilst others luckily have few bothersome symptoms. Every success with your ops and I hope yjat things settle down for you ❤️
Thanks for your lovely message, and I'm sorry you've entered the world of RA! In the nicest possible way, I wish you hadn't!
I started with RA symptoms when I was 13 and was diagnosed a few months later just after turning 14. So later this year it will have been 39 years - eek! I am sero-positive. As for medication, I take the following DMARDs: Humira, Prednisolone, Methotrexate, Cyclosporin and Hydroxychloroquine. Quite a few, but it's been difficult to control.
Thanks for thinking me chirpy - I appreciate that. Like everyone though, I definitely have some mardy and tearful moments too! It's very scary being diagnosed with something like this disease, and you're totally right, there is such a variety in experience. It can be a bit scary reading about things that have happened to others. What I hope will re-assure you though is that people like me who were diagnosed so long ago, didn't have such good treatments as now early on, as they were not yet available. The options were very limited. As such, by the time biologics and even Methotrexate became available lots of damage was already done. I've been told a few times in recent years that they are seeing "many less people like me" nowadays, which I guess can only be a good thing! When the Consultant has students in, I feel like a bit of an ancient museum piece as he's pointing out various things they won't see very often now! I have to remind myself I'm only 52 still!
Anyway, I hope that might help a little? I also hope you are getting good care and that your disease can be brought well under control. Take care xx😊
Thanks for sharing and such a lovely response. I'm the same age and seropositive.I'm due to start baricitinib so this may be the one 😊think worse part is not recognising myself and going from very active. After joining this very lovely group I smile, cry and even laugh at some of the comments. What an amazing lot you are. I'm the same age as you and full of admiration for you. Not in a patronising way at all but you have definitely done the best with the cards life has dealt you and not been defined by this.
All the best with spine and much love and support 🤗
Aah, thank you and I know what you mean and definitely don't think you were being patronising at all.
I certainly hope this one is going to be "your" treatment. Have you tried many others? How long have you had the condition?
It must be so difficult adjusting to the changes in your life. I can't imagine. In a perverse way I think that aspect was easier (not sure if that's the right word), as I've sort of grown-up with it, if that makes sense. It must be very hard to suddenly have to start adapting and re-appraising so many areas of your life.
I've tried to not let it define me - I didn't want to become an illness with a person attached! Unfortunately though, it's inevitable it's shaped certain choices and decisions. I've just tried to get on with things as best I can and some times that's gone better than others! What else can you do?!
I really hope the baricitinib works wonders for you. 🤞🤞🤞😊xx
Oh Kags, this is totally pants, I’m so sorry to read about the fracture in your spine. I don’t have any experience of the treatments you are describing so can’t provide any direct help but just wanted to send my love and a big hug. I was going to say you deserve a break, but that would be totally inappropriate in this situation wouldn’t it?! 😜😆Hope you don’t mind the warped humour, just my attempt to make you smile a little this morning. Keeping things crossed for improvement for you 🤞xxx
Haha!! No, I certainly don't mind a warped sense of humour! It's kept me going for years - I think if I can't (eventually) laugh about it or poke fun at it, then I'm stuffed!! I know that doesn't work for everyone as we all cope differently, but it seems to get me through! 😉
Thanks for your lovely message, and yes, it definitely made me smile! Ta xx😁
I am in awe what you have been through and continue to endure, it just seems so cruel and unfair for such a lovely lady to go though. It sounds like you have a very good medical team around you, I hope they can give you the best advice to help you move forward. Sending you lots of positive hope on every level and thinking of you on June 21st for your eye op xx
Aaw, Becky - thanks so much for your lovely comments - totally undeserved by the way!! I guess it's mutual as I'm in awe of everything you have (and continue) to endure and how you stay so kind, generous and chirpy too!
You're right, I think I have been pretty lucky with my medical team and have had good continuity of care. Especially after hearing what some people on the site are having to endure!
Hope you are feeling a bit better and enjoying some nice sunshine?🤞🤞
Finally, although the offer of a mouse pie was very generous, 😳😳 I think on this occasion I shall politely decline - watching my waistline and all that ...........! Hope you're not offended 😆😆
Oh Kags, I’m so sorry to hear this and remember your fall as we spoke after I had a bottom of the stairs tumble end of last year. I’ve no advice that will help sorry to say but you’re on such a lot of pain meds (I was in all of those when my RA med failed in 2014 and Fentanyl patches too so know how they can make you feel out of sorts too 😑.) I hope these procedures will help you and I’ve no experience or knowledge either, here .. you’re teaching us on all of this. Just wishing better times for you soon and gentle healing hugs to you. 💗xx
Thanks so much for your response. I remember us discussing our respective nasty falls too!
I'm normally on the paracetamol and tramadol, but generally manage to stay just below the maximum doses. Sometimes needs must though. Not had the pleasure of fentanyl patches (thank goodness). God knows how odd they might make you feel. I hope you got off them without too much trouble.
I'm glad you found the post useful(ish). I guess any knowledge we can spread to each other that could help other members is definitely a good thing. I've certainly learned lots from others' posts.
I hope things are a bit better for you at the moment xx🤞🤞
So sorry to hear your news! It seems you are the opposite to the guy in unbreakable. I had oramorph after my shoulder replacement. It does work but it made me quite trippy. Hugs over the email gently 💐
Haha - yes!! I could be his (not very scary) nemesis 😁I think I'm a bit like a lump of cement as unless I have lots and lots of oramorph, I don't feel anything except a bit sleepy! Still, that should help me not to become addicted. 😁😁 Having said that though I had MST (another type of morphine formula) after my hip revision and that made me hallucinate (whilst not awake but not asleep either) that a group of people were standing around at the end of my hospital bed and I was lecturing them (god help them)! My friend came just as it was happening and was bewildered to find me in bed with my eyes closed waving my arms around and moving my mouth as though I was talking! Very bizarre, but not unpleasant. Felt very real.
I hope your shoulder replacement went well. Was it worth it? I've been mulling over whether to have it done for a good few years! 🙄xx
I would definitely recommend it! I was down to 20percent movement and in agony all the time. Had full titanium replacement sept 2019 and can now raise my arm over my head 85 percent movement and swing it around better than before and blessing upon blessing no pain at all. Had titanium because I have a nickel allergy. Also told by a friendly mortician that if I was cremated happy days! They can recycle it as bones go at 1200 heat and shoulder 1600. They send then to Sweden to be recycled. So I am truly bionic 😃
That's really impressive with the shoulder replacement. I can still stand the pain at present, but the loss of movement is getting worse. I can't get either arm much higher than my mouth level. Trying to reach out for things is very difficult- as you well know!
I'm really pleased it's worked so well for you and is making life a bit easier. Hope it wasn't too painful to go through. I don't know what the recovery period is like. You are a very good advert for having one.
I had no idea they could use different materials depending on allergies. That's brilliant.
You really are planning ahead with the cremation business - haha!! Very civic minded of you. You truly are bionic!!
Ps. A friendly mortician - is that a bit of a paradox?! 😆😆xx
In hospital for total of three days- including day I went in. Arrived at 7am operated on at 1.30 had physio at 6pm could not believe it!Had to shower at home with plastic bag on for a fortnight. Went to my GP for change of dressing twice. Week three had stitches out at hospital and physio every second Wednesday for twelve sessions with exercises to do at home.
I was very nervous as I had only been in hospital once before to give birth to my daughter and once for severe ear infection both one night each!
The staff were terrific and I could not fault anything apart from the fact that I had to use a cardboard bed pan after my op!
If you get the chance go ahead. It has been a life changer for me- I can now turn over in my sleep. 😃
Wow - that's brilliant. I'm really glad it went so well. It's just such a relief when an op makes that much of a difference. It's definitely re-assuring for me for if/when I finally go ahead. Thanks. Xx
I was also put on alendronic acid for five years as an X-ray showed spider web fractures starting around my body. They were very excited to see it at the hospital needless to say I wasn’t!
Wow - that is an odd one. Can see why they got excited! I hope the fractures didn't progress. Did you tolerate the alendronic acid ok? Can play havoc with the tummy xx
Oh dear ,I have several fractures in my back due to being on long term steroids for 5 yrs , been in agony , can only walk a few yds without having to sit down , or lean on something, away at the moment but have to use a wheelchair, due to Covid I have waited 2yrs 8 months for the operation of veterbloplasty next appointment in July to find out if getting op, for me it’s been terrible , also suffer from RA , hoping for better news . Good luck
Oh dear, I'm really sorry to hear all that. It sounds awful. After only 5 years of steroids too! Very unfair. At least I've been on them 28 years, so it's a bit more understandable.
Hard that you've waited so long too, and still don't know if you'll get the Vertebroplasty. You'd think if they had decided it was necessary, they would have put you on the waiting list ages ago. At least you would be working your way up by now.
Hope you're having a nice break, despite the wheelchair. I've hadto use one for any distances for a number of years now due to the RA and I still hate it!
I really hope you get some good news in July, and I definitely feel your pain.
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Wish the doctors would listen
Is redness normal?
Bad timing!
