Last reply 3 years ago
Starting treatment

Hi i wonder if anybody in the uk can help. Due to see neuro on Tuesday and keen to start capoxone. If we agree on it as a course of treatment how long can I expect to wait before actually getting my hands on it and starting treatment? I’m hoping days rather than weeks as I should have started something 4 years ago but they decided to ignore my lesions on my scan, Grrr.

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jessvf14
3 years ago

Copaxone even!


stumbler
3 years ago

@jessvf14 , I fear it will be a few weeks, rather than days. There’s form-filling, budgetary approval, drug ordering and arranging initial nurse support for you.

Be patient. You’ve unfortunately had to wait four years, so a few more weeks shouldn’t be too onerous.

Just take care of yourself and don’t stress yourself out about starting this treatment.


gemma87
3 years ago

It takes about 2weeks maybe 3, after neuro prescribes it to you. You will also have to visit your nurse once you get the needles so they can show you how to inject manually safely. Theyl probably do this prescription on Tuesday when you see them. I can see its been a long wait for you but the injections will be here before you know it ?. Dmds are treatments not medicines so itl take its time to absorb into your system. My neuro told me this could take up to 6months….everyones different though,so this could work immediately for you. Worse thing to do is stress. Just relax,look after your body and wait for your capaxone. Its a good feeling taking control isnt it!, good luck with it all. Ps the injections might leave red itchy lumps but stick with it as your skin will get used to it. I found capaxone a nice dmd with no side effects x


avengr13
3 years ago

@jeffv415 I am starting copaxone too after 30 years with ms.(long story) Although I am in the states so the wait is quite a bit shorter than the U.K. as I am starting 2 weeks after my doctor’s order for the drug.


jessvf14
3 years ago

Thank you all! Yes it’s been 6 years going backwards and forwards so just glad to finally be recognised. That’s good, as long as I know what to expect I can’t be disappointed. Just want to feel like I’m doing something.


edgarleroy
3 years ago

Hope it works for you, it’s easy to tolerate. If there’s still activity (relapse, MRI or csf), try one of the more effective. As for the 4 years, your medical team is incompetent, distracted, lazy & should be fired. Malpractice – that’s the word.


jessvf14
3 years ago

I know, I’m going to make a complaint. I thought capoxone because the aside effects looked acceptable to me compared to others (I’m relatively lucky with the symptoms I’ve had so far, no major motor losses) and then at least I can progress to the “harder” drugs if I need to.


stumbler
3 years ago

Think on, @jessvf14 , before making a complaint. MS is notoriously difficult to diagnose and there are strict criteria that need to be met before a formal diagnosis.

One of the problems is the word “Multiple” in the term Multiple Sclerosis. This means that you can have one episode and not fulfil the criteria. Such terms as Clinically Isolated Syndrome (CIS) and Transverse Myelitis are used in these circumstances.

Medical professionals aren’t magicians and can only work with what they see.

Making a complaint would not alter a thing. In fact, the stress that you may incur may make you deteriorate. Stress and deterioration go together, so stress is best avoided.

Concentrate on yourself, working on taking care of yourself and how best to manage your MS. 😉


hope33
3 years ago

Hi I’ve been on Copaxone since May and haven’t had any horrible side effects. I inject manually rather than using the autoinject which I have found from reading and use, reduces injection site reactions like itchy bumps and lipoatrophy. All the best with it.


jessvf14
3 years ago

I don’t expect anything from the complaint, but I had an MRI in 2010 and one in 2012, the latter of which showed a lesion in the top of my cervical spine. If they just missed them then fair enough, but in that period I had 3 relapses and optic neuritis and I found out in April at my last appointment that they knew at least one lesion was there as it was reported as ?lesions ?artefact, but nobody thought to follow it up with a spinal MRI. When I was told it was “missed” they also told me I would have qualified for ms diagnosis because it would have shown dissemination in time between the lesion and my EVP from ON. That’s what they told me. Fast forward to 2016 and After more relapses I now have multiple in my head and there are a bucketful in my spine. I know it isn’t a given but had I been on treatment this could have been less and I would have had other things to take in to consideration when starting my family a couple of years ago. I don’t expect to gain anything from the complaint so don’t think it would cause me stress but I just find it negligible and people should be accountable for their mistakes or at least be made aware of them.


stumbler
3 years ago

I see, @jessvf14 . You do seem to have a grievance. And , I do understand you wanting to call them to account.

I have no connection with the medical services, apart from via my wife, who is a long time suffering nurse! 😉


jessvf14
3 years ago

I’m an NHS scientist so whilst we don’t have direct dealings with patients we still have systems in place should we do anything that would affect patient results. Mistakes happen, I understand that, this was just ignored. I doubt anything will come of it and it wouldn’t surprise me if it was swept under the rug. I’m just fortunate pregnancy went smoothly and I didn’t suffer a major relapse afterwards, which apparently is common. Never mind. Onwards and upwards to Tuesday!


potter
3 years ago

Jess it took me a good 10 years before I could get a referral to a neuro. When I finally got a referral my GP sent me because he thought I had hurt my elbow. The neuro did the MS tests because I have such a family history of MS and ALS. I also had many lesions in my brain by then. Potter


jessvf14
3 years ago

Oh @potter that’s rubbish! I have 2 fantastic GPs to be fair and they have never hesitated with referring me, this is my 4th referral back, I gave up somewhere on the middle. You’d think with your history it would have flagged something?


potter
3 years ago

We ended up with this GP because the insurance that was offered to us through the company my husband worked for was unpopular with doctors. This GP had to take our family because we went to the doctor he bought the practice from. Kansas has a doctor of the year award and the year I was diagnosed he won that award. I was furious, I knew what a uncaring doctor he was especially towards women. When he referred me to the neuro I said maybe they could test me for MS while I am there. He looked at me and said even if you have it they can’t do anything for you. I go to a woman GP now that I have different insurance. I will never fully trust a male doctor again. Potter


cheryl118
3 years ago

@potter
OMG same story here. I was having symptoms for about 3 or 4 years. My leg was dragging and I had several falls. I kept going to the doctor and they said that nothing was wrong with me. I went to 4 different neurologists. They all told me that I was fine and that nothing was wrong with me. I found a neurologist out of The University of Chicago. He is supposedly very well known with an excellent reputation. I sat in his office and he examined me. He said that nothing was wrong with me. I finally said to him, “Do you think that I could have MS?” He replied, “No you don’t have MS, and even if you did, there’s nothing you can do about it.” And he walked out of the room. I felt like a big hypochondriac fool. I was diagnosed about 6 months later, when I could barely walk.


potter
3 years ago

It sounds you had a worse time than I did, I never had problems with my legs but I did have misc. symptoms off and on. One summer I had problems with MS hug, I thought at first I was having a heart attack. I guess I was lucky that the neuro I saw wanted to test me for MS if he couldn’t find any nerve damage in my elbow. He also tested me for ALS which is also in my family, I have had 9 close relatives die of it. The only thing I didn’t like is that he called me to tell me my diagnoses. I think a doctor should do this in person and maybe have a counselor or MS nurse to talk to you about your disease. Potter


samanthastyle
3 years ago

Hey there! I’m in Canada and after I spoke to my neuro about a medication choice, I had the meds and everything I needed within one week… I decided to wait a little longer to start. (About two weeks) I am starting on Copaxone, tomorrow!


ctefehinoz
3 years ago

Ladies,
Once you get the Copaxone, pay attention to the long, long list of possible side-effects. I read it and wound up getting a lot of dental work (mostly small holes) over the years. Nothing outrageous – but be aware. One red-hot tip I’ll share – do NOT inject anywhere near a skin fold line. It’ll spare you the misery of necrosis & subsequent “wound care”. Second to that – those needles are slim and razor sharp. I tried to catch one before it hit the floor and it went all the way into the fleshy part of a finger- sideways 🙂 . As to the brave soul (hope33) who doesn’t use the Autoject, I take my hat off to you.

Regards
Ctefehinoz

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