Any advice would be greatly appreciated!!

[Kags1068]

Hello everyone!

I hope you don't mind me posting. I normally lurk on the Rheumatoid Arthritis site (NRAS), but am having some overlapping bone issues at present. I was hoping someone might be able to offer me some advice/insight/tips, etc!

I'm 52 now, and have had severe Juvenile RA since I was 14. I've had hips and knees replaced, many other orthopaedic ops and a number of eye ops as the RA has severely affectedy eyes. I've also hadto take oral steroids for about 28 years.

Unfortunately, all this has taken its toll on my bones. I started getting stress fractures in 2007. One in my pelvis, then several in my right ankle. This was exacerbated by an ankle deformity. In 2018 I had my ankle straightened and fused, and as yet, thankfully no more fractures.

I've been on cholecalciferol for many years. Also, during this period I tried Risedronate/Actonell for a while (until I couldn't stand the side effects), and then Prolia/Denosumab for 2-3 years. Again, I asked to stop this as it increasingly gave me side effects. For the last 3 years or so I have been having a break from any other bone treatments.

Unfortunately, in January this year, I fell and broke my femur in between my hip and knee replacement. (Peri-Prosthetic Femur fracture)? I had my most recent x-ray and check-up on 14/7 and was told that for the previous six weeks, not much healing had occurred. The doc said it takes 6 months in a "healthy" person for this type of fracture to heal, so it could take at least 9 months for me. I'm to remain partial weight bearing for yet another 12 weeks, hope for the best and then back for another x-ray etc. He mentioned the term "delayed union" but said it wasn't quite long enough yet for that (thankfully). He also spoke about what would happen if it doesn't heal. Frankly, it has really worried me. To complicate matters further, I developed severe back/rib pain in May. Long story short I had a T7 spinal compression fracture and evidence of 3 older rib fractures. This was starting to heal, then mid-June I felt something "pop" and I've been in a lot of pain ever since. Nearly 6 weeks later now, and I'm still having to mainly lie or sit reclining on my bed. I can't sit upright in a chair for more than about 15 minutes before the pain is unbearable.

Honestly, I'm pretty fed-up! I feel like I'm in a never ending cycle at present. I know I will have to start some sort of bone treatment again, but have been waiting for various scans to be done first. (Although will have to have treatment anyway). The treatment the Rheumatologist has mentioned is the Zolendrate infusion. Bit worried again about side effects.

I have read about a treatment called Forsteo/teriparatide. Does anyone have experience of this? I understand it's more difficult to access and is more expensive. I'm interested in it because I've read it actually creates new bone growth as well as strengthening existing bone. As such, it has been used with some success in the treatment of delayed union and non-uniom fractures (including femur fractures). Does anyone have experience of Femur fracture(s), or indeed of any kind of delayed union or non-uniom fracture and what was done to help healing?

I've also read about something called an Exogen bone stimulating device. Again, this has been used (with some success) to help fractures heal. I understand some health authorities will supply them. Does anyone have experience of using one of these, or how to access one?

I'm sorry this post is so long and appreciate anyone taking the time to read it. I'm very worried about what may lie ahead with my leg, etc and can't shake the feeling that I'm just relying on hope to help my leg heal! That's why I'm very interested to hear if anyone has had any success (or not), in encouraging bone healing. I feel I want to do anything I can to try and help things, rather than just sit here for yet another 12 weeks crossing my fingers!!

I wish you all well. Thank you xx😊

[fraid]

Hi Kags,so sorry to hear of all your woes,what a terrible time you are having.I can’t offer any advice re treatments as I am not having any,declined Prolia coz of side effects. Can only hope things improve for you & you get the help you need.Best wishes.X

[Kags1068 in reply to fraid]

Hi fraid

Thank you for taking the time to reply, and also for your good wishes. I completely understand your decision not to take Prolia. These decisions about treatment are very difficult for us to make. I hope it all works out well for you. Best wishes X

[veriterc]

Don't worry about length - this is what forum is all about. As something to think about - is there a hydrotherapy pool near you? It sounds as if this might give you some relief at least, and might be useful for exercising muscles especially if you can't bear weight. In Europe this therapy is used extensively with wonderful results; NHS doesn't understand it and thinks it's a Spa treatment! There is a lot about benefits here aftercancers.com/hydrotheraoy

[Kags1068 in reply to veriterc]

Hi veritec

Thank you for your kind reply and your comments about my post.

Hydrotherapy is an excellent suggestion. I'm in the UK, and between the ages of about 14-18 I had it regularly. We used to have a Miner's Rehab place fairly close, and in the afternoons they used to take NHS patients in their hydrotherapy pool. You would get 2 sessions per week for 6 weeks. It helped me enormously, and they very kindly often let me have extra sessions. (I think they felt a bit sorry for me because of my age and condition, etc). Either way, it was much appreciated. Unfortunately, with the demise of the mines, the coal board closed the Rehab centre and it was sold. For a time we had a hydrotherapy "tank" at the local hospital (which I attended), but that was closed too. I don't know of any NHS provision locally any more, although I will check. There is private pool within about 10 miles or so of me, but it's £60 for an initial consult, the £60 per half hour one-to-one session. Unfortunately, I just couldn't afford that.

Anyway, thanks for replying and suggesting it, as you say, it really is an excellent form of therapy.

Best wishes X😊

[MollyStark]

Hi, I'm so sorry to hear about your health issues, you've not had an easy time.

I am on Forsteo. I started the treatment in October last year. I am tolerating it well (some minor nausea on and off for the first few weeks.)

I have had three spinal fractures (I am 58) and my consultant initially suggested the bisphosphonate infusion. I was not keen on this and after doing my research, I asked if he would prescribe teriparitide, which he was happy to (this is on the NHS.) If you are going to start on OP treatments, try to get teriparitide prescribed first. Because it builds actual bone, it will be a better base for following on with a bisphosphonate - they cause old bone to be retained so starting with a bisphosphonate is not ideal. Unfortunately, they are the cheapest of the bone treatments, which is why the NHS usually dish them out first.

The very best of luck, please let us know how you get on.

[Kags1068]

Hi Mollystark

Thanks so much for your informative reply. It's so good to hear that you are actually on the treatment and not experiencing any unmanageable side effects. That's really encouraging.

Can I ask what was the speciality of the consultant who prescribed it? My treatment will likely be through my rheumatologist. Did it take long before you were able to start it? Unfortunately, I had Risedronate/Actonell for a while some years ago. (I think this is a biphosphonate)? I think I perhaps had it for 2-3 years and stopped it in about 2014-15, when I switched to Prolia. Would that be a barrier to being prescribed Teriparatide?

Again,any thanks for your advice. I hope you are well.

Best wishes X😊

[Posy-White]

Hello Kags1068

Sorry to read youre having a difficult time, I hope you have been able to get some good support with pain managment?

You ask about Teriparatide medication - I had the 24 month course of the daily injections of Forsteo, after several spinal fractures - I understand it is a bit of a postcode lottery as it is expensive and rheumatologists usually only offer the treatment after several fractures. Since I had Forsteo I understand Movymia and Terrosa have become available, they are I understand the same Teriparatide medication but cheaper than Forsteo.

From your post I would have thought you came into the 'several fractures' group so worth talking to your Consultant Rheumatologist about it. The details about these like other medications are listed on the ROS website. Had you thought about talking with one of the ROS nurses on the helpline to talk through different medications and get ideas what might be best for you?

The only problem I had with Forsteo was at the begining headaches, dizziness, nausea, low energy for about first 2-3 weeks. A blood test showed my calcuim levels might be too high, told to reduced calcuim tablets, that worked and for most of the time I was okay with this medication.

Hope you are able to find medication you feel confident about taking. It's quite a worry to know what to do for the best which is why I have found this site with peer support so helpful.

Best Wishes

Posy White

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[Kags1068]

Hello Posy-White

Thank you for your very helpful and informative reply. It's very heartening to hear you were able to access the Teriparatide treatment and managed to tolerate it without too many horrible side effects. I hope it helped you.

I didn't know there were now cheaper versions of the medication available. That may help my case! I've had about 12 fractures now, so I would hope that may come under the banner of "several fractures." My vague understanding of other qualifying factors which could also apply to me are: have had a spinal fracture, have Rheumatoid Arthritis,have had 'steroid induced' fractures and have already tried Actonell and Denosumab. As you say though, it does very much seem to be a postcode lottery. Coincidentally, I had a video appt last night with my rheumatologist. I suggested the Teriparatide and he seemed to think it could be a good option for me as it could help on 2 levels (to help femur heal and strengthen bones generally). He says they have to apply for funding and it is difficult. The one condition I don't fit is that your dexa scan is supposed to show a 3 point deviation (? not sure if I got that right)! My dexa scan always give a false normal reading. This is apparently due to the fact it can only be done on my spine (hip replacements), and as my spine has joint damage, the scan misreads it as normal.

I will wait and see if it leads anywhere, but it's given me a glimmer of hope for now. I haven't been in touch with ROS yet, but have been told they are very good, so thanks for the tip.

You are absolutely right. It is very difficult to know which medication to take for the best - especially with the very unpleasant side effects that can be part and parcel. It is definitely very useful being able to get first-hand advice from others who have been in similar situations. As such, thank you again for replying.

I hope you are as well as possible. X😊

[Posy-White]

Hello Kags1068

That is good news, at least the rheumatologist is happy with the idea and trying to get the funding. Fingers are crossed for you.

Best Wishes

Posy White

[Kags1068 in reply to Posy-White]

Thank you Posy-White. I'll be keeping mine crossed too! 😉🤞

Best wishes X😊