Support and Advice

[Thefreckledone]

I am a 60 year old male who was diagnosed with stage 3 Hodgkins Lymphoma in June 2023. I had 6 months of chemotherapy which was very difficult. Not only on myself but also my wife.

My immune system was badly affected. My last treatment was in December 2023 and I had developed severe back pain and I was struggling to walk or stand straight.

I had tests and scans. One of the scans showed that I had 4 fractures in my spine. A further 2 fractures were discovered later during surgery and these were also operated on.

I was referred to an amazing surgeon who got me into hospital as soon as possible and performed a Procedure called Kyphoplasty. This improved my mobility but I am still in a great deal of pain. I am on daily doses of morphine and progabaline.

I have seen a rheumatologist and I am due to start on a 2 year course of Teriparatide injections.

Before any of my illness I would say that I had a good level of fitness and at the present time I cannot do any regular exercise due to pain and fatigue.

This is so frustrating for me.

Has anyone been through similar or does anyone have any positive stories about Teriparatide to give me some reassurance that things will improve for me.

I look forward to hearing for other members.

please do not suggest any social media groups as I am not on any.

[fraid]

So sorry to hear of your plight and I do not have any help to offer re your meds. A lot of us struggle but learn to accept adapt. Despite all my physical problems I find a positive attitude, humour and beer help enormously! There are people you can contact to talk to on this site who may help you. Good luck. 🤞🤗

[Craftycreator]

I’m so sorry to read your story, I do hope your pain will eventually settle. I can’t really give you the information you seek, but wanted to say I have just completed the 2 year course of Teriparatide. Pleased be assured it’s not too bad and giving yourself a daily injection soon becomes routine. Needles are very fine and short and it’s not painful. Frustratingly I don’t know if this has done what it’s supposed to do, ie build bone. My consultant wants to wait another year before I have a DEXA scan as he wants to see the results when my very recent infusion of Zolendronic acid should have consolidated any bone gain. Believe me you are not alone. Osteoporosis is very difficult to come to terms with. I would also suggest contacting the ROS nurses for more help if needed. Local ROS support group contact may be another option? Very best wishes and hope you get some relief from the pain soon.

[ROSModerator Partner]

Hi Thefreckledone,

We wish you a warm welcome to our online community 😊 It sounds like it has been an incredibly difficult couple of years for you and your wife with the different diagnoses and treatments you've been through, so we thank you for joining us here and sharing your story with us. We wanted to let you know that we have lots of information on our website about living with osteoporosis, including drug treatments that you might find helpful: theros.org.uk/information-a...

We hope you continue to connect with our wonderful members here and find the support you're looking for. Please let your wife know that this community is also a place for loved ones of those living with osteoporosis 😊

Wishing you all the best,

Lulu

ROS Moderator

[Errp82]

hi, I had Teriparatide injections for 18 months, no problems. Wish I could have continued but this was 10 yrs ago and, at that time, that was the longest time allowed. Good luck

[emersee in reply to Errp82]

How have you progressed since? I hope you have no more fractures.