Does Celabolin or Zoledronic Acid work?

I have enthesopathy and have tried Methotrexate, Sulfasalazine, Hydroxychloroquine and Prednisolone but without any success. Last hope is Zoledronic Acid infusion but I am concerned about side-effects. Have read about Celabolin but don't know anyone who has tried it. The joints affected are mainly fingers, wrists and elbows (both sides) and it started 2.5 years ago.

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  • Sorry Glasgowgirl - what is entesopathy - is it part of RA? Apart from the drugs you have tried and failed I haven't heard of any of the others but really hope they work well for you soon. TTx

  • Hi and thanks for asking the question.

    I suffer Enthesitis, used to just be above/below hips, knees and ankle joints but in recent yrs, my ribs, breast bone, elbow and shoulder joints are joining in. Very sensitive/painful to touch.

    It's constant though my meds (Naproxen, Leflunomide,Tramadol and Amytriptyline), do help me manage the pain.

    I'll be especially interested in any answers/advice you get.

    Beth xx

  • What is enthesopathy? I will google as have never heard of it but guess what Beth says its pain to the touch?

  • Yeah Gina, it's inflammation where ligaments and tendons attach to the bone.

    It's called Enthesopathy as a disease and Enthesitis is full blown inflammation where the ligament/tendons attach to bone. When it flares in my legs after I've been on my feet for a while, it actually feels like the bones in my leg is going to snap. xx

  • Hi Beth

    I am so glad someone knows what Enthesopathy/Enthesitis is - it's been so lonely and frustrating not knowing anyone else who has it.

    The past 4 days have been a nightmare - elbows, wrists and fingers driving me mad. Sometimes amputation seems a perfectly reasonable solution!

    Ironically, I had 10 days relatively pain-free prior to that and even told a friend that I thought the condition was perhaps going (Consultant said that it can stop spontaneously in the same way it started!).

    I'm tempted to try the Zoledronic Acid infusion as nothing else has worked but don't know anyone who has tried it. I'm trying to stay positive and move forward, including finding a job/starting a business, but some days it feels impossible.

    Do you have any tips? I find heat pads bring relief but it's not always practical.

    I look forward to hearing from you.

    x

  • I must admit I was really glad and relieved when I saw your question as I've not come across anyone with this either..

    Sorry can't give any quick fix tips. Sadly it's the same with all autoimmune arthritic conditions, painkillers regularly (to stay on top of pain) pace yourself and rest as and when you can, also, gentle exercise is a must for maintaining muscle strength.

    I've always found complete rest is best and stronger painkillers as and when needed, I keep a store of 3 different strengths of pain relief.

    During more severe flares affecting my whole body I tend to dope up on meds and sleep it off for a few days. Better days I find staying in control and taking painkillers/relaxants on time, also, in the evening a soak in a hot bath after meds helps relax enabling restful nights.

    One of the problems I've been having lately, my chest pain has been put down to inflammation of the soft tissue around the breast bone, shoulders and ribs, turns out I have heart failure, so I never know when I need to summon help or not? All a bit confusing sometimes!

    Beth xx

  • Thanks for replying - good to know I'm not alone!

    When did you first start with enthesitis? I started 2.5 years ago and have no idea how long it will last - I keep hoping it will miraculously stop.

    I take Gabapentin and Amitriptyline daily but am unsure of their effectiveness. I also take Dihydrocodeine MR 120mg twice a day with paracetamol for pain relief but still have break-through pain. Some days are manageable but others not-so.

    I have depression too and the pain certainly adds to that, which makes it hard to stay positive some days.

    I am desperate to return to work but I'm not sure how I will manage when I'm having a 'bad day'. Do you work? If so, how do you manage your bad days?

    Many thanks. :o) x

  • Sorry don't have any good news for you as far as I'm concerned.. Though this condition can go into remission it's not likely in my case. I also have seronegative spondyloarthropathy mainly pointing toward Ankylosing Spondylitis. Like you I've also suffered low mood swings leading to depression from time to time.

    I take a host of meds now, but for other conditions too. Main pain and arthritic meds are; Naproxen, Leflunomide, Amytriptyline and Tramadol.

    I started having problems as a child, but never had a major flare until I was 28 straight after the birth of my 4th baby. I remember telling the midwife to chop my head off as my body was so painful. We laughed it off at the time, but it was just the beginning of things to come. I'm now 53 and still having major problems at times.

    I have worked most of my life, taking time out when I needed to, returning to work when I felt better able to manage physically and mentally. Sadly I had to leave work as I could no longer manage due to this and other health conditions causing fatigue and the stress of working within the NHS causing flare after flare.

    Do remember that these conditions are never the same in any 2 people, a lot also depends on the help and support you get at work and within the home. So enlist the support of others and health agencies i.e. Social services (for aids and addaptions), Access to work (for support within the workplace) and of course Occ health within the workplace, there are lots of support they can give from counselling to aids/addaptions at work.

    Hope this helps, if you need to offload don't hesitate to write a blog on this site, or if more personal advice is needed you can private message me.

    Beth xx

  • Oh gosh Beth, that sounds awful, I'm glad you seem to be getting good medical care.

    Xx Gina

  • And believe it or not my consultant insists I exercise i.e. walking, swimming to maintain muscle strength especially in the thighs, which will delay the need for a full time wheelchair. lol x

  • Hi glasgowgirl - I have just had an infusion on Friday so can answer your query on Zoledronic Acid infusion. I normally have 3 monthly infusion of ibandronate but on Friday was offered Aclasta (brand name for Zoledronic Acid infusion ) This will now last 1 year. It took about 15 mins to infuse follwed by 15 mins saline drip to flush it through & 15 mins rest so allow about an hour at the hospital. The side effects I find are mainly extreme fatigue and very sensitive bones the first day following infusion but I allow a day of complete rest - 30 mins after infusion I was asleep so get someone to drive you to hospital just to be safe. I also have Rituximab infusions for my RA and I find the Aclasta is much easier to cope with. I also have to make sure my teeth are good before infusion and I have to let dentists know I'm having it before any dental treatment. I also have to take a calcium and vitamin D supplement everyday.

    Hope this helps you make a decision and good luck

    Sue x

  • Hi

    I received a letter yesterday informing me of an appointment for Zoledronic infusion = Mon 21 May. Wasn't expecting it to be at such short notice! I'm relieved in one sense but also nervous as I was expecting more time to prepare myself.

    I will only receive Zoledronic acid annually if it proves effective - it it's not effective that is the end of the line for me because nothing has worked and other treatment is too expensive to be used in my case because my symptoms are not severe enough to warrant it.

    I was wondering how soon after infusion the Zoledronic begins to work? I'm desparately hoping it does work but was wondering how long I will have to wait to know if it is having an effect?

    I've been unemployed for over a year now, having left my last job due to the joint pain and side-effects of meds. I'm desparate to get back to work and am even trying to start my own business BUT the pain levels would make it hard to work some days and I would love to get the condition under control so I can focus on work and getting myself out of the rut I find myself in.

    I would value your opinion and details of experiences.

    Many thanks.

    Glasgie Girl

  • Hi glasgowgirl, Sorry I have not been on laptop for a few days so missed your question. I had the Aclasta (Zoledronic acid) on 20th April and was expecting it to be the same as Ibandronate infusion which I had previously every 3 months. It took about 30 mins in all to infuse and flush through with saline. I felt ok for a day but I then went into a terrible RA flare which lasted a week and was severe. I have since had another Rituximab infusion (these take 6 hours) so the flare has subsided. My RA consultant thought the Aclasta caused the flare but other than that I have been ok. As I take so many other drugs - MTX, naproxyn,amitriptyline,mepradec,prednisolone and codeine & paracetamol for extra pain relief I really can't say how well the Aclasta works. In my case it is being given to strengthen the bones that have been damaged with steroid use.

    What has your consultant explained to you about what to expect ? I really do hope that it works for you but remember to rest your body and allow the infusion time to work.

    Good luck on 21st - love Sue

  • Hi Sue

    Thanks for your reply. :o)

    My Consultant hasn't told me what to expect just that it's the last resort, with no guarantees it will work, and that it's up to me if I want to try it!

    Like you I take several other drugs (amitriptyline, Gapabentin, Dihydrocodeine, Paracetamol and Ibuprofen + drugs for my epilepsy) and I am keeping everything crossed that this infusion will work.

    Do you manage to work? As I said, I had to leave my last job due to pain, etc, and am desperate to get working again. I try to keep myself busy with voluntary work but it would be nice to get paid again!

    Thanks for your support. I will heed your advice to take it easy after the infusion and, fingers-crossed, it will have a positive effect on my pain levels. The appointment is now scheduled for Thursday 24th because my friend couldn't attend 21st and I wanted his support at the hospital and I need him to give me a lift home!

    Best wishes,

    Fliss

  • Hi Fliss

    I actually took early retirement at 51 from a very pressured job travelling the country teaching lawyers how to use and maintain their computerised practices.

    I worked away from home 5 days a week for 10 years and was exhausted ! The money was great but quality of life terrible. My husband, a builder, and I bought an old house in France to renovate and from 2003-2009 I was his builders mate and riding buddy. (We both had our own Harley Davidsons and travelled Europe when not working) In Nov 2009 I woke up one morning and couldn't move & by Christmas was in a wheelchair. Talk about life changing. Anyway it's taken until now to get any sort of response from all sorts of drugs. Anti-tnf's, biologics etc all tried. These biologic Rituximab infusions have helped a bit although I am still registered disabled and find it difficult to get around without sticks and on bad days a walker or mobility scooter. I am ever hopeful that I will wake one day and it will be gone again as quickly as it came. I don't work anylonger and even find my housework a problem. I used to be so independant and a hyper at work and so respected - I feel useless at the moment.

    I really do hope that you start to feel the benefits and can cope with gentle work soon but I have found that the dreaded 'pace yourself' really does work. If I'm tired I rest and have got over the pride issue of doing nothing although it does make you stir crazy sometimes. As an interesting note, a male collegue in France was diagnosed with RA in 2010. They took him into hospital and made him stay in bed for complete bedrest for 6 months and he is now back to normal. I haven't heard of this anywhere on our websites but I know it worked for him !? If I don't improve soon I will ask about the theory behind this.......

    Good luck on 24th. I am in hospital tomorrow for my Rituximab infusion and that takes 6 hours and leaves me zonked.

    Keep in touch and stay positive

    Love Sue x

  • Hi Sue

    Good luck with your infusion tomorrow - hope it brings some relief.

    Take care,

    Fliss x

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