The plexopathy continues

[Viklou]

After speaking to the consultant again he is saying to maintain long term on a low dose of Prednisolone. I'm back I agony so I have to do something. The Gabapentin isn't helping in the slightest so I'm coming off it slowly. I asked if there was an alternative to the Prednisolone and he mentioned methotrexate, azathioprine and mercaptapurine. I really need this guy to speak to the gastro team as they seem happy to treat my crohn's with Budesonide, another steroid. I'm thinking while 20mg of Prednisolone helped both. 10 mgs won't cut it on its own. I was asking the ibd nurses if I could take both steroids at the same time but never got an answer. Google seems to suggest taking both is an option but I'll check with the pharmacist when I get them as my stomach also flared up so taking 9mgs of Budesonide at the minute.

I'm exhausted as and I'm falling asleep all the time except when i should be asleep normally the Budesonide helps, but I feel like it's just not giving me the boost it did. Symptom wise in the gut department it's better but my appetite isn't great.... I suppose the pred will definitely fix that lol

[Dolly38]

Good morningI feel so sad for you and sorry to hear of your pain. Gabapentin seems to either help or not help. It knocked me out completely enabled me to be a verbal loose canon!

It's such a difficult time for us both patient and Doctors.

Distraction has helped me enormously......sadly it's TV at the end of the day when I have looked after my family etc

Never give up hope.....may be there is no cure just a better place to be in. By this I mean have distractions that you may enjoy. I understand your difficulties and your long journey

[Konagirl60]

What plexopathy do you have? Pelvic, sacral..?

Have you tried Amytriptyline?

[Viklou in reply to Konagirl60]

Lumbosacral I've tried 10mg of Amitriptyline for what was thought to be IBS it didn't really help much mind you it was only 10mg. The other thing is I seemed to swell up on it and have trouble breathing when I laid down. This didn't happen straight away, it took a few weeks. I stopped taking it and the swelling went down. It was like I was building up fluid in my body for some reason

[Konagirl60 in reply to Viklou]

That doesn’t sound good. You don’t want to swell and retain fluid.

Have you tried Tramadol?

[Viklou in reply to Konagirl60]

Yes but I was only on it a short time. I came off them after a week of having them prescribed by an urgent care doctor along with diazepan brilliant combination but they didn't give me any more after the muscle spasms subsided

[Konagirl60 in reply to Viklou]

Hmm. Would any doctor give you some Tramadol?

Diazepam is effective but very hard to wean off of. I used it for 13 years and weaned off earlier this year. What a nightmare!

I hope some one can help you.

Passionflower is a natural pain killer. It might help you. You can get it at any reputable health food store.