5 spinal fractures, a cyst on the lower spine and blood cancer. Hospital asked my GP to discuss stronger pain relief. He changed my pain patches to fentanyl 12
And also sent gabapentin 100 there was no patient information leaflet in the gabapentin, just a label on the box saying to take 1 the first day, 2 the second day and 3 a day after that.
As there was no leaflet I Googled and don't like the sound of it. I'm sure I saw somewhere that it can cause fractures. I refused to take Proton pump inhibitors for the same reason when they tried to give me me those. I don't understand why give someone with osteoporosis and a fracture history a drug that can cause fractures. Because I don't take a ppi I use gaviscon quite a lot. As I understand it gabapentin shouldn't be taken within 2 hours of heartburn medication. This leaves me thinking when the hell would I find time to take it. So far I haven't and I'm not sure I'm going to. GP will be ringing in a week to find out how I'm getting on with it.
I'd like to know others experiences of this drug and also if there are any other alternatives. At the moment I take paracetamol and codeine alongside the pain patches and am wondering if better the devil you know.
Carol
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MCW22
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Hello, I too have blood cancer, 6 or 7 compression fractures and I take Pregabalin, which is related to Gabapentin. I have never tried Gabapentin but Pregabalin is the wonder drug for me; I wasn't sleeping, had issues getting up in the night, pain and peripheral neuropathy. It doesn't help the neuropathy, so it's just as well it is not really painful - just uncomfortable.
This morning I have gone back on to Alendronic Acid, which when I was precribed it initiially, I read that it can cause dental problems so I stopped it. My doctor has persuaded me that my bones are more important than my teeth, so there we go. Keep upright for at least 30 minutes and drink a lot of water. I had all sorts of plans, but it wasn't difficult to keep myself occupied for 30 minutes, washing up and preparing my cooked Sunday breakfast. I have yet to take a shower. I've been taking the PPI Lansoprazole and I also take EvacalD3, but reading the long instructions, I'm told not to take calcium.
Well, anyway, so far, so good. No digestive problems with the AA and I have now taken all my little daily pills (no supplements on a Sunday) - aspirin, water pills, PPI and Tramadol. The tramadol I am finishing up because they make me drowsy and I've got Zapain now, which is a stronger form of Paracetamol.
I didn't know PPIs gave you fractures! There's so much we need to know when you've been given a cocktail.
I don't know what the pain patches were that they gave me in the hospital but they didn't work but I used them up; who knows, without them, I might have had more pain. The doctor at A & E always tells me I have no new fractures and then tells me what I've got and there it is! They have no concept of the pain compression fractures can cause and treat you like you are kidding them and just want attention.
As I have said, I love Pregabalin but if you run out of it 🤬and if you have anything else going on in your life, it really is hellish. I've run out a few times and each time I have more or less started from scratch, which is good because I never reached the highest dose I was recommended to work up to. I take three at night and that gets me to sleep, though not right away. But now I sleep like I did when I was 10 years old and normally get up in the morning feeling refreshed. I firmly believe that a proper night's sleep is the most important thing to make sure you get. If you can't sleep it must mess with your health totally.
I stopped taking the PPI, just taking one once a week but my doctor said I should take them every day for them to work properly! I was doing fine most of the time on once a week.
I've read that some people can't get on with Gabapentin and they switch to Pregabalin; I have never been on Gabapentin. I hope this helps you. There aren't many people on HU with blood cancer, and there are so many types, so I don't know whether you will get many more replies. Good luck. PM me if you want more information about me.
Maggie, have you thought about having the yearly bisphosphonate infusion instead of the weekly tablet. I was given AA and then a different tablet when I said I didn't want the AA. As I see it those of us with heartburn and other digestive problems should not be given these type of bisphosphonates but of course they always want to palm you off with whatever is cheapest. The yearly infusion bypasses the stomach so for me it has been much better. Only side effect is feeling a bit out of sorts the day after, but just take a couple of paracetamol.
Hi Carol, I learned about an annual injection last summer but for some reason - probably financial - my doctor has preferred to give me AA. At least it's not every day. I was already on Lansoprazole so as long as I follow the precise instructions I should be ok. I haven't been ok today and I thnk it's because I took Tramadol, whch is better taken at night. I have refused AA for a couple of years or so because of what it can do to one's teeth but my doctor pointed out that my bones are more important than my teeth and I'm inclined to agree.
I broke my wrist in January 2020. Long story but when the plaster came off I had developed CRPS which was very unpleasant. My hand was a complete mess and I knew I really needed physiotherapy for it however with covid my GO said she couldn’t refer me to the hospital or even put me on a waiting list.
She did prescribe Lyrica which is pregabalin, I think a relative of gabapentin. It didn’t agree with me at all,I felt really peculiar, I couldn’t walk in a straight line, I clung to my husband when we were out for our hour of exercise, my vision became very poor, I didn’t realise until I stopped it had been like looking through a grey veil. I felt very strange, on our walks I was looking for places to scatter my ashes because I felt as if I was dying. I also had a weird urge to take more to see if I felt better which I found worrying. I had not long started taking alendronic acid at that point. I spoke to my GP and she said to stop the Lyrica which I did which was when I realised my vision was much clearer and I could watch TV again - I had pretty much given up at that point.
I was lucky enough to get a remote appointment with a hand physiotherapist for the CRPS and we worked on desensitisation exercises and she sent me splints. Before I started with her she suggested I ask to try gabapentin while she was working with me. I did that but I felt similar to what I had done on the pregabalin so I stopped that too. I figured the ‘gaba’ drugs just didn’t agree with me. I was lucky that with the help of the hand physio I was able to sort out the CRPS.
I think this might be the PIL (patient information leaflet) for your gabapentin. Your pharmacy should always include one when they precsribe meds for you. If it isn’t just Google for the one that matches what you have been given.
My GP said to come off the Pregabalin, but that''s the best drug I have ever taken if you don't mind the shakes and twitches. When you stopped, how did you do it?
I cut back a little for a week or so then just stopped. I was on a very low dose and hadn’t been taking it for all that long so I was fine. I didn’t have shakes and twitches though, just depressed plus a weird out of body feeling and an urge to take more and more. It didn’t do anything for the CRPS in my hand which was the reason I was taking it.
Thanks, Fruitandnut. I have experienced something similar to you when I had run out of the drug, so I think weaning myself off it would overcome that, but would I sleep? Maybe I would. I have been on it for quite a while and haven't had the twitches for that long. He's only suggesting coming off it to see if it is, in fact, responsible for the twitches andn so on.
I've been getting really tired, so I have reduced my dose of pregabalin because I felt that I would have little difficulty sleeping, and I didn't have a problem; I slept well last night. I am tired again but I won't reduce the dose again for a week or so. The problem is that from our last conversation, my GP has doubled the dosage of each capsule, so that when I next order it, it will be hard to reduce. The reason for the reduction is only to find out which side effects are due to pregablin. I'm on 100 mg now, at night only. It is an amazing drug; I don't think enough is known about how it affects different people.
Think you should probably speak to your doctor and tell him or her that you want to wean yourself off and why. I was only on a low dose and not for very long so I think my circumstances are quite different to yours. I did tell my doctor I wanted to stop - well I told her I wanted to stop and I’d started cutting back which she agreed with. If you’ve been told to increase the dose and you’ve been taking it for a while you can’t just stop like I did.
I take 250 mg of liquid gabapentin at night for back pain and it helps me sleep better and I avoid night sweats. When I don't take it all my symptoms return. I have been on this for several years and have not increased dosage. I to have digestive issues and gerd which almost destroyed my throat. I take PPI twice a day which has helped my throat. I have all my teeth and my dentist does not recommend any of the osteoporosis meds. I had shoulder surgery a couple years ago and the doctor said my bones looked healthy to her. I walk several times a day and try to work in other exercise. All the health decisions are personal and how we react to meds are individual as well. I am glad we have each other for support though. Best Wishes everyone.
I take gabapentin for Restless Leg Syndrome, and it's a lifesaver and sanity saver for me. It is the reason I can sleep. I haven't had any bad side effects. It's possible I'm having good side effects I'm not aware of, like pain relief.
I have a Tarlov cyst at the base of my spine, and don’t know how much my pain is due to that and how much is the side effect of Teriparatide (osteoporosis treatment because of spinal fractures). I found that Gabapentin worked well for me for the first 7 months, then stopped working for nerve pain. I’m Considering switching to pregabalin (same family but has better reviews?).
I use Gaviscon for GERD and ended up having to only take it at bedtime so as to be 2 hours after the Gabapentin. I take Famotodine (an H2 blocker - an alternative to PPIs). It’s supposed to be better than PPIs for osteoporosis . I also use liquorice root tablets from Holland &Barret. They are an alternative to PPIs. Doctors in the UK don’t know much about liquorice root (it’s not recognized by the multi millionaire drug companies !)
I had been on paracetamol for a month (4grams per day, which is max adult dose). That backfired because it made me ill after one month. I discovered that I shouldn’t have been prescribed 4 grams per day because I weighed under 50 kilos!!! I’d had morphine, but obviously that wasn’t a long term solution. When I started Gabapentin it was with 100 mg three times a day, and gradually upped it to 500 mg/day, although prescribed to increase up to 600 mg. . I am very sensitive to medications so not keen to increase too much. I’m on the phone to a pharmacy as I type, to try and get their view about switching to pregabalin. (Will phone pharmacist later coz no answer now….)
9 spinal fractures. Pregabalin gave me suicidal thoughts and had to stop, although I think it was working for pain. Gabapentin was like an "out of body" experience, which was horrid. Zoledronic Infusion done in October seems okay, but I am noticing some sensitivity in my front teeth, which was not there before. A trip to the dentist coming up. Too late, it's already in my system. Just hoping it works for these bloody fractures. I take paracetamol + codeine for the back. I also have PMR in addition to the Osteoporosis and it's the steroids that caused the Osteo. I take 2 ppi's a day to protect my stomach. These can cause brittle bones. Stuck between a rock and a hard place. We are all different. All the best to you.
Hi MCW22 , It’s lovely to see everyone sharing their experiences with you. If you would like more information on pain relief, we have a managing pain section on our website theros.org.uk/information-a... and we also have a fact sheet strwebprdmedia.blob.core.wi... . If you don’t find answers on our website, or to discuss your own situation, our specialist nurses can support you: 0808 800 0035 (UK).
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