worst fears seem to be coming true.

[Angelicspirit]

Dear friends,

I posted on here in March 2021 asking your advice as to whether I should even start on Teriparatide worrying about rebound fractures afterwards because I was told there was no other drug that I could safely take. The 2 years on Teriparatide ( Forsteo) passed far too quickly but interrupted over Christmas 2022 by my pens for some reason not being reordered. I finished my last Forsteo pen on 29th July last year and was keen to find out what my new bone density scores would be. I was also being told that, my other conditions taken into consideration, Zoledronic Acid was my only remaining option to help preserve any gains made on Forsteo. My DEXA scan in August showed a noticeable improvement in my scores. I was concerned that my follow up consultation with the bone clinic wasn’t until the end of October. I was told that my HRT would support me until October, when a decision would me made on my follow up treatment. All the time I was thinking about maintaining what the Forsteo had achieved. The October appointment with the bone clinic came and I left having been told that the registrar would meet with his professor and make a decision as to whether I could safely take Zoledronic Acid. ( I have several chronic conditions and a history of adverse drug reactions following Steven’s Johnson Syndrome ) Meanwhile I was having one tooth extraction and being told by my dental surgeon that 2 more might survive as long as I didn’t have the acid. If I was to have the acid, I must have the extractions to be safe. As a dental surgeon he warned against having Zoledronic acid. ( I also have TMJ and arthritis in my jaw ) November passed and I heard nothing from the bone clinic. In December, (19th) we sent a message asking for reassurance on the hospitals portal. A nurse replied early the next day having left a message for the registrar I had seen in October. On January 10 th & 12 th we sent more another message but never got a reply other than from the nurses. It was then pointed out that we were only a month away from a telephone consultation. Yesterday and on time, I received a phone call from a consultant at the bone clinic. He asked me what follow up treatment was I on ?! When I told him there was a sudden urgency in his manner. He was going to contact my dental surgeon and I need to be on the acid to preserve the gains I had made. I have to say, this consultant was very kind and understanding of my fears.

I have clearly been overlooked. I did very well on Teriparatide but what’s left? I cannot have more than 2 years on Forsteo and I finished it 7 months ago. I have to heal from two dental extractions before having the infusion , so that’s still 2 or 3 months away. I am so upset and I’m angry with myself for putting my trust in them. All I can do now is wait again . Nice guidelines aside, may I ask if any of you have real life experience or knowledge of how long I can be off treatment before the last two years become irrelevant? I’ve decided to have a private DEXA scan. Thank you for ‘listening’ to me.

Love to you all, Margaret.

[Sunseaandsand]

Hello Angelicspirit,

I had a Dexa Scan a month after finishing 2 years of treatment with Teriparatide my Spine had increased by 5.5%.

I had a drug holiday and was without any follow up treatment.

My next Dexa scan 19 months later showed I had lost 14%.

I would have been better not having at all.

I do believe I wrote to you when you were asking about having treatment with Teriparatide and gave you my experience of it.

Sadly now I have 15 fractures in the spine, with small ones in the pelvis, ribs and hips.

In the last 6months 4 of my vertebrae have broken much further , and have also had a further fracture high in the thoracic.

My advice to anyone reading this is as I have always said get on another treatment as soon as possible after being on any of the bone treatments.xx

[Fruitandnutcase]

I’ve thought of you often and wondered how things were going for you since you last posted. I can’t answer your question but I’m so sorry you have been overlooked. Hopefully your doctors will get their act together and get things going for you. At least your dentist sounds as if he knows what’s what. Know that you are in my thoughts and I’m sending you the strength to keep going. 🙏

[Angelicspirit in reply to Fruitandnutcase]

Thank you so much. Your kindness is always so supportive and I really do appreciate it. The dental side of this is such a complication, and I’m awaiting a partial knee replacement too. My jaw moves out of place just by laying on my pillow and I’m probably needing ( just in case) two big teeth out all without pain killers. Then, if I get through all that, it’s quite possible that I will have an adverse reaction to the acid.

My last tooth extraction took an hour with a very experienced surgeon standing on the chair and weeks of dealing with dry socket. I do admit, I get very depressed sometimes and wonder why so much goes wrong. I will let you know when I have any news . Bless you and thank you again.

Warmest wishes, Margaret

[wellness1]

I'm so sorry for what you've been going through and also sorry I don't have any helpful information to share. I just want to say I'm furious on your behalf that you did not receive timely and appropriate treatment and had to chase them to get any answers. Your dental situation makes things complicated and I'm relieved you at last were contacted by a kind and competent doctor. I hope this is resolved and you are able to go forward with appropriate treatment soon. Wishing you the best.

[Angelicspirit in reply to wellness1]

Thank you so much for your kind reply and well, just for caring. I do feel very alone with the number of fractures that I’ve had and alone too with my heart condition, which is an unusual one. If I may, I will keep you up to date. I haven’t heard any thing more yet but I should hear from my dental surgeon soon

Warmest wishes, Margaret

[wellness1 in reply to Angelicspirit]

Yes, please do keep us informed and know that many wish the best for you as you contend with so much. I hope you do hear soon. It's a burden to have to chase practitioners on top of dealing with difficult and painful conditions.

If they go ahead with the Zolendronic acid infusion, you may have read tips here about lessening adverse reactions. Members have posted about drinking lots of water before and after, paracetamol if tolerated, and requesting that they slow the infusion time.

Take care, Margaret.

[Angelicspirit in reply to wellness1]

Hi Wellness1

Thank you again. Your kind support is truly appreciated . I always take on board all the valuable advice that is given to me. I will be asking for the acid to be given over an extended period and make sure that’s in place before the appointment. Any trouble on the day, and I will just walk out. 🙏🏻👼🏻❤️

[Mavary]

Hi after Terraparatide I was put straight on to Denosumab. I’ve had two teeth removed while being on it with no problems other than being badly bruised. The other problem arose when they had to withhold my Denosumab for a while because my Vitamin D was too low. I had four more fractures because it was late. I’ve now been told I’ve got to have my blood test a month before the infusion of Denosumab.

[Angelicspirit in reply to Mavary]

Thank you for sharing this. Unfortunately I tried Denosumab a few years ago and it gave me a huge cyst on my lower jaw. It took weeks to treat, changing the dressing at home every day. I actually had a deep hole in the side of my jaw and still have the scar. For that reason I was told to discontinue and there was no mention of rebound fractures. Then I just had spontaneous fractures ( 14 in total ) I was on HRT only until I eventually had Forsteo

Sending warmest wishes to you ,

Margaret

[Mavary in reply to Angelicspirit]

Oh my goodness that sounds dreadful. Luckily I’ve had no problems but I know others have had other things that have given them problems. I do wonder if I’ll always get away with taking Denosumab. I hope so. I’ve been told I’m on it for life.

[josephinius1]

I can't add much to what's already been posted except that I'm also sorry this has happened, and I appreciate your sharing your experience.

I don't have the complications you have, but you have bolstered my determine to not depend on doctors, insurance, etc. if at all possible. I didn't actually set out to be pharmaceutical-free, this first year post-diagnosis, but I was "forgotten" (slipped through the cracks?) three different times, twice with the doctor prescribing the drugs. In fairness to him, he didn't expect my insurance to deny coverage, as in his opinion it absolutely was "medically necessary," but...once he did his part that first time, he (understandably) wasn't looking for info about my success or failure, and no one in his office alerted him to the situation. When I saw him again two months later, he said he was going to appeal, and failing that, he wanted to tr a different drug that also had to be sorted out internally. This time, they just dropped the ball entirely, never heard from thrm again, but I let it roll because by that time I was so close to the year mark, I just anted to see, via a repeat DEXA, if I'd made any progress without the drugs. (I did, so, yay!) But, it's this kind of thing that scares me. You hear about rebound fractures with Prolia, but not so much about what happens if you don't get your follow-up with forteo or...other drugs. Hopefully you won't have lost your gains, hopefully you haven't fractured in this interim period (did you say you had? If so, my apologies. I read responses, then am not sure who said what.) But if you did, and it's due to circumstances out of your control, (as it would be,) that's...just unspeakably frustrating, even tragic. And it seems clear it could also easily be so for me, at the rate we've been going.

All the best to you!

[Angelicspirit in reply to josephinius1]

Thank you so much for your lovely reply. I’m so grateful to you for taking the time and trouble to offer help. I don’t think I had any fractures while actually taking Teriparatide but the additional intense pain that I have had on several occasions since coming off Forsteo, suggests that I may have had more or at the very least one or more of the my 14 fractures is still moving or settling. There comes a point where you don’t see any point in reporting any more pain. Doctors cannot prescribe me any pain killers and there is often an awkward silence when a new one is told that and they certainly omit to mention that I’m in constant pain when they write their follow up letters. I’ve tried booking a private DEXA scan but been told I can’t have more than 1 in a year, even if I’m paying for it. I can’t imagine how frustrating it must be for you to know you need a medicine and then have to get past your insurance.

I send you my warmest wishes, Margaret

[Southerngirl2787]

I am so sorry you were overlooked, it's a terrible place to be in. I have Stevens Johnson Syndrome as well, for the last 45 years, wonderful to be a survivor! I was told long ago, do not take Zoledronic Acid. For us, there are many drugs very dangerous to our condition. I'm taking Tymlos, which is similar to Forteo...and struggling to figure out what to do post Tymlos in about 6 months. There are no good options. I have 10, well, now 11 spinal fractures, surgeon says bone density is improving. I'm not a good DEXA candidate anymore...but he's looking at it during surgery, so that's good enough. I'll probably go with Strontium Citrate, low dose at first, and all the regular supplements, and I take one by Paul Saladino MD, Bone Matrix.

[Angelicspirit in reply to Southerngirl2787]

Hi and thank you fellow survivor! I’m so sorry that you’re a member of the club.

I had a severe reaction to Diclofenac in 2007 with my airway closing during the very early hours one morning. No ambulances available, my husband was told to drive me to A & E and they would be waiting for me. When I got there my face and left side of body were starting to burn and I was gasping for air. I was told never to have any NSAID again and over the following years my body rejected every form of painkiller ( except simple paracetamol. ) Over the years I became generally unwell without a clear diagnosis. In 20143 after a couple of blue light runs to hospital, I was diagnosed ( after a lot of dismissal by cardiologists ) with what is now known as INOCA. I was put on several trial and error cardiac drugs which my body started to react to after day 3 of taking them. Lips swelled and airway would start closing. Eventually I seemed to tolerate a couple of heart meds but suddenly one day, I was gasping for air, and a small rash that I had , spread upwards over my entire body and in a very short time it started blistering.

Went A&E and unbelievably they took more interest in my rash than the fact my airway was closing! My rash which was now swelling and changing colour had never been seen before and word got round so that I had a queue of visitors from variou departments . I suggested SJS without wishing to upset their egos or talk too wise, but to them all, the answer was ‘What’s SJS ?’ I was taken off my heart meds and given an alternative. In late 2019 , I received a phone call from a research nurse at The University of Liverpool Hospital Department of personalised medicine. She had got my details from the charity SJS awareness UK and asked me how my health had been since being diagnosed with SJS.

Her timing was incredible as she could hear that my voice was still recovering from an allergic reaction to Ranolazine. She said her work was showing that SJS continues to damage our bodies and is not a ‘one off’ attack. My apologies if you already know this but it certainly makes sense as to why my body is failing in so many areas. We went on to being invited to Liverpool to assist in their research and attending conferences in London with the professor and his team from the personalised medicine department.. Anita the nurse , created a ‘Passport’ for survivors to carry, detailing all relevant information about the patient’s date of diagnosis and drug reactions Over the last few years, if I’ve had to call paramedics or attend A&E, instead of trying to explain my history, I can hand over my passport. I was admitted to hospital last year for Covid and the team who looked after me were so grateful to have all my information in one small book.

You may have a similar charity in your state but do look them up, there’s lots of information on there.

You’re so right about there being no good options for our ongoing care.

Take care, and warmest wishes to you

Margaret 🙏🏻👼🏻❤️

[Southerngirl2787 in reply to Angelicspirit]

You've had a bad go of it! Mine started when I was in my teens, after I had a horrible reaction to vaccinations. Next reaction was to a common over the counter cold virus medicine, I almost died from that one, Robitussion CF. Burns over 60% of my body, 2nd and 3rd degree, lost my fingerprints for nearly a year. Airways, nasal passages, all other mucosa areas severely damaged, throat has never been the same. Next major reaction was to antibiotics. By the time I was 23 I had figured it out, while doctors were still working on it. I've lived the majority of my life without antibiotics, staying well 99% of the time. My list of meds I cannot take is very very long. SJS does cause lasting issues, and they seem to be worse as the years go by. I had a parathyroid tumor removed in 2017, but severe OP causing now 11 spinal fractures, 8 moderate to complete discs rupturing. One doc understands the damage done long ago, and they think I had to autoimmune responses start way back at the 2nd major SJS attack. Living with nerve damage is pretty rough too, as we cannot take anti-convulsive drugs, and that's the #1 go to these days for nerves. That said, we are a rare bunch making it this long, so many die their first round with it! Take Care!

[Angelicspirit in reply to Southerngirl2787]

I understand your pain and me and my hubby send our love and our prayers.

X👼🏻🙏🏻❤️❤️