Headache

[Alley27]

Hi everyone may I ask if anyone suffers from headaches all the time.

As I have mentioned my medication was changed from 50 mg mercaptopurin per day to 2000 mg mycophenolate per day.

Since starting this medication, I am most certainly not myself and this damn headache is getting me down. I wake up with it, and its still there at bedtime. Paracetamol is not touching it and like with the anxious feeling that I now have when out alone it started about 4 days after starting the new meds.

If you look at the side effects of the drug, these are on there and you are supposed to tell the doctor if you have headache with the medication.

I can't get an appointment for 21 weeks , according to the consultant secretary and I don't know what to do exactly because this medication is not suiting me. I also have noticed liver pain since starting them...

What should my next move be, any advice is welcome.

Thank you xx

[Hidden]

Hi

I'm sorry you are struggling at the moment. Could you perhaps get your GP to send a letter directly to the consultant to see if that helps in any way. I hope you feel better soon. Take care Lynne

[Yellow_fish]

Hi Alley27

Sorry to hear things aren't going well with your medication. I would definitely try via your GP route - I am sure they would be able to help speed things up to get you back to your consultant.

Take care

YF

[Candy12]

It’s awful to suffer like that, you shouldn’t have wait 21 weeks. Have a word with your Gp, perhaps even a telephone appointment if nothing else would at least clarify what you should do.

If it were me and I couldn’t get an appointment with the GP I’d call 111, they always seem to manage to get you to the care you need, even if it’s with a walk in centre doctor.

Failing all that you could try asking the pharmacist they are so knowledgeable about medications and I’am sure they could advise. Hope you get some relief from it soon. Take care

[butterflyEi]

Hi Alley27

I have no medical experience but it seems to me to be a massive jump from 50mg to 2000mg even though it is a change in names of medication. With some medications people halve the dose until they get used to it and slowly increase to the prescribed dosage, that may be worth a try if all of the other avenues suggested by the others fail but I would certainly try the pharmacist first as he/she will be most accessible. Some medication do not suit everyone and sometimes it is trial and error as I am sure you know but certainly you need some professional help.

[Biddyb]

You need to get in touch with your GP as soon as. I took an immunosuppressant when it was prescribed which made me extremely ill my GP told me to stop taking them and within a few hours my symptoms eased my LFT bloods went from being sky high to almost half within 3 days. Are you in the UK if so you should be getting help today. Good luck

[mrspeffer2]

Good morning...I'm hoping this writing finds you feeling a little bit better. I have had a similar experience with products that I want to share with you.

I had dangerous levels of Estrone in my body and was given something to lower that level. I took the full recommended dose and within just a short while, the headache came on and would not leave. After a few days of thinking it would go away, I decided that maybe I needed to stop the drug. I did and in a couple of days, no more headache. But I still had to address the reason I was given the drug to begin with.

Unable to get into the doctor or to get staff on the phone, I called the chemist at the pharmacy. They recommended to return to my "normal" regime for one week, before stopping it completely. After that, I was to start titrating up on the new med very slowly. They suggested 1/4 dose increase weekly until up to full dosage. The waiting for a week in-between increases is to see what dose you can or cannot tolerate. I tried this method and was able to get on full dose within the month.

I realize we are all different, and would encourage you to speak with a medical professional about this before ever doing so. Perhaps there is a nurse hotline you can call that is associated with your insurance? Being from the USA, I'm sure things are a little different, but I would think that there is someone, a pharmacist, medical assistant, nurse that could help. You could always call he drug manufacturer too.

I'm wondering...why the change in medication was made to begin with.

Hope this helps....Be well

[Alley27]

Thank you all so much for your replies...I am going to try and speak to the chemist pharmacist and see if he can give me more information on this drug....I cannot go on like this at all...I was settled on the mercaptopurine even though at times I hated what it did to my body. I hate mycophenolate more....I cannot have a normal day...at first I blamed the steroids, because they do nasty things to me, but headache is not one of them...I think they have me on too high a dose....others I have spoken to are not on the same level of the drug as me.. I think something is not right.

I also considered heat stroke and dehydration...but for 6 weeks..no, and I drink 2 litre of water per day plus tea and coffee...so not that...not to mention the anxiety..which is so very out of character for me..and again, steroids never did this to me. 111 is becoming an option as well.

On a positive note, consultant said that i can lower the steroid by 5 mg per week and then stay on 5 until my next appointment...I am still no closer to being changed to budesonide as they promised me..which is also peeing me off...my face is moony..my gut is distended and my temper....well....

Its the medication, it has to be...

Thank you for your help

[mrspeffer2]

Please stay close to us and let us know how this turns out for you. I had to go on a 7 day steroid pack for a terrible sinus infection. While on it, i was starving all the time, and actually lost weight while on a food filled vacation. Funny, the pack of steroids was completed, my eating back to realistic intake and healthy, and sure enough...weight gain. Go figure. I blame everything on the planets any more. Life is always throwing me something interesting to deal with. Wish you blessed days filled with soft, peaceful moments.

Be well

[Alley27 in reply to mrspeffer2]

I often say in my defence the moon was full, like my face...lol....I am not hungry, the mycophenolate ensure that. I can actually go from morning to night without eating....but I make myself eat 3 times a day because I know I need to. Last night had fish and chips because I fancied them, from the chip shop but today my liver hurts, or rather something hurts possible to do with the fact that my fish and chips were fried..but sometimes you just have to lol

Not sure what to do because I still have the headache and with what we have you need to consider portal vein hypertension...but doc said my blood pressure is really good, then there's encephalitis....all I know is I should not have a constant headache....

Rang consultant secretary again yesterday and told th about this headache, she's not got back to me yet. They need to because an idiot would even say that something is wrong with this..

111..if I don't get a ring back tomorrow then I will have to ring them for some advice...

Thanks again xx

[Alley27]

Hi I rang the consultant as you know and hes said stick with the mycophenolate for a bit longer because it's working..I said what about my headache and everything else..he said that the benefits out weigh the side effects...so I am stuck on this however, I am feeling a bit better in myself..so we will see..mu head is clearing so dont get headaches as much especially since weather is cooling down. Thanks for the support everyone xx