Hi
I'm new here. From the UK. Dx 2003 aged 46, now 51. .I'm affected by tremor but my biggest problem is extreme difficulty walking. This has been developing for years before dx. I cope pretty well - no depression despite (perhaps because!!) of the divorce fron hell. Adrenaline's a good medication! In April this year I was one of the first people in this health authority to be prescribed the Neupro patch and I'm interested to read of others' experience and to contribute my own, for what it's worth. (Sorry re typos - takes me ages to type and I'm too impatient to correct them all)
I had high hopes - but sadly not been realised. I'd been on 10mg selegeline for a couple of years but didn't really notice ny improvement or slowing down of progressiion. At Easter I started 2mg patches, gradually building up to 8mg. No problems up to 6mg - but no physical improvement either - but at 8mg things went v pear-shaped. All the PD symptoms - tremor/rigidity - got worse and spread to usually unaffected right side. Scary! Shortly after going up to 8 mg I got a horrendous photo sensitivity skin blistering reaction all over the exposed areas my body - tho no problems with irritation under the patch. I also felt the beginnings of dyskenisias - one of my greatest fears. I folded the patch to reduce the surface area but was persuaded to stick (no pun imtended) with 8mg. I got so ill I've been off work since then. I gradually - by doing NOTHING; which goes totally gaianst the grain!!! - became able to tolerate it more. I've developed numbness/ tingling in fingers and feet. The specialoist said it wasn't a side effect of the patch and I had nerve conductivity tests whch were ok. I've since found the drug info leaflet gives numbness /tingling as a side effect in 1 in 100 to 1 in 1,000 people. (Why didn't the specialists know? They had a conference about it and rang me to say it definitely wasn't a side effect, must have tests etc!) Nausea has been largely controlled with Domperidone.
Now here's the bit that I'm struggling with. The specialists say that they think the fact that the 8mg makes my symptoms worse (not the side effects the actual disease symptoms) means that I'm under dosed and should gradually increase to 16mg. I dutifully added a 2mg patch to my 8mg last week and, hey presto, within 48 hours was so much worse it was horrible. I persisted for nearly a week and then reduced back to 8 and within 48hours was back to my 'normal' level symptoms. I feel that the specialists think it's somehow my fault! but I'm really not Mrs awkward squad! I'm actually a psychology lecturer(perhaps should say 'was') and am very aware of all the many influences and individual differences that inflluence drug actions/interactions within the person. It just seems totally counter-intuitive to say thast bcuase a drug is making your disease symptoms worse you need more of it! I've now taken some unilateral action and intend gradually to reduce the dose using the appropriate size patches and keep a diary of symtoms to discuss at my next apptment
Incidentally I was badly bitten by a mosquiro on the eyelid 2 nights ago and the next morning and this morning I walked completely normally for about 30 minutes!!Haven't been able to do that for years and years. it was absolutelt fantastic - felt like I was floating; then I gradually stiffened up again. NOrmally I'm worst in the morning. . Should |I invest in a mosquito breeding farm??
I'd love to hear from others re their experiences - it strikes me we're all feeling our way in the dark with these patches.
Keep on movin' & shakin'
Janpen99