@anettauk

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anettauk

lemtrada experience

I've been reading about very positive experiences with Lemtrada treatment, which is very encouraging. I'm very interested to know if anyone has had a bad experience with Lemtrada? x

TracyD

@TracyD

@anettauk sorry can't report any bad experience at all with Lemtrada, all the good experiences are on my treatment blog which I've been updating since before treatment x http://tracyslemtradajourney.blogspot.co.uk/

US-Emma

@US-Emma

Just the recovery period when energy was low. I am going to start a new post on this and see if my case was a fluke.

anettauk

@anettauk

I've been following your blog Tracy, find it very encouraging. I'm thinking about Lemtrada treatment but it's a bit scary (a lot!). Good luck Emma! I'm looking forward to your posts. xx

lilbird

@lilbird

Hi there @anetteuk I had been wondering the same thing. Everything I've read so far seems so positive that it feels like it must be too good to be true! :/

sinead

@sinead

Only good so far, had treatment first week ok feb - was back at work as a vet (long hours etc) 2 weeks after and apart from a string of colds thankfully I am only continuing to improve :) still can't run but walking distance has improved 100% best of luck to you all xx

melissag

@melissag

I'm curious about this too. To those who have had lemtrada, what were the things they warned you of before you began? I've read about things like thyroid issues etc, I just havent seen much on how common it is. Im seeing my neuro next week and am considering bringing it up, but I know he is going to be difficult about it!

melissag

@melissag

@orlando27 thanks for your reply. I really want to learn as much as I can about it before talking to my doctor, I know he is going to either just say no to it since it isn't considered a "first line" treatment right now, or try to scare me off with the possible side effects. He's always been difficult, so I'd like to be as prepared as I can be to decide if I want to continue pushing for it in spite of him!

US-Emma

@US-Emma

@orlando gave a great breakdown of all the risks, here are their relative risks by %: Thyroid Disorder 30-35%- easily treated, i am not concerned ITP- Idiopathic Thrombocytopenic Purpura 3-5% Basically a slow developing clotting disorder that is easily caught and treated with the monthly labs required of Lem patients. I am not concerned. GoodPasture's Syndrome 0.03% serious kidney disorder that is VERY rare. So rare that either either occurs in 1 or 0 patients in large trials, so it is hard to put a % on it. It is the only one of the 3 I am concerned with. Lemtrada follow up also screens for this. The GP is not known to be a problem in the first 3 years post your first dose. As I get closer to this I will start to monitor my urine (with a strip similar to a urine pregnancy test) twice a week. 100 tests cost me $12 so it is an easy, cost effective path to peace of mind. GP can be treated successfully if caught early. I honestly do not know why docs are so concerned about Lem side effects- i think the SE of other MS treatments are much worse (PML being the obvious example of this). I think when you have a bad disease and not many treatments (such was the case in MS in 2000) the docs will accept more risk/side effects. As we have more treatments (although none compare to Lem) they accept fewer. But as patients we dont accept disability at all. We are looking at disbility vs no disability. Docs looks at one meds SE vs another. I think they miss the point.

melissag

@melissag

@orlando I'm actually in Canada, where its approved for treating RRMS, just not as a first line drug. I'm hoping the fact that I have tried a few other drugs before this will help to persuade them to give it to me @US-Emma Thanks for the info thats helpful! And I definitely agree with you about Dr's missing the point. Really when it comes down to it, I think if someone is aware of the possible risks and feels that the positives would out way the negatives, it should be up to them!

TracyD

@TracyD

@US-Emma In reference to Good Pastures, and the pee sticks .... are they the ones that you use for Diabetes tests ? Keytones and proteins and if so what are you hoping the stick won't show ?? xx

US-Emma

@US-Emma

I use a stick with 10 tests on it, called a Chem 10 Urine Dipstick, or some variation of that. I order it from med supply through my license. Someone in the UK has told me they were able to get it on Amazon. You are looking to monitor Blood & Glucose, both should be negative. Make sure you have no cross contamination if you are female... I clean the area and use a cup for collection. Then dip from the cup. The blood may be positive even if there is no red color. 'Occult Blood' is minute concentrations that are not visible with the naked eye. You should report any abnormalities (but if unsure, take another sample & retest). Both of these signs are non-specific, meaning they could indicate a variety of issues. So keep a journal of your tests and report abnormals to your doc, MS nurse, etc.

melissag

@melissag

@orlando27 wow, that's a huge improvement. All of these positive stories being shared on shift are really making me hope even more that they will give it to me. I think that at this point I'm really ready for it. Fingers crossed!

TracyD

@TracyD

@US-Emma - those pee sticks again .... if I'm on a carb free VLCD and my body is in ketosis would that skew any of the expected result ?

US-Emma

@US-Emma

No, ketones will show high (darker pink) but glucose and protein are separate tabs on the test. Do you have any issues with a low carb diet? I tried that but as nerves need glucose/sugar as their only food source I found the diet caused extra numbness & tingling. One caution- a ketogenic diet is a bit hard on the kidneys although I think it is safe in most ppl. Were you to acquire some kidney damage (from Lemtrada or other sources- possibilities include trauma, diabetes, complications of smoking, toxocities to name a few) while on such a diet it would be much harder on your kidneys. Just be careful, do it for as short a time as possible and be wary of other drugs/like style choices that put stress on the kidney. Drink lots of water to flush the keytones through the system. I have been following "hungry girl" type of low cal cooking and lose about 3-5 pounds a week. There are other options. This diet I am on is heavy on the cooking but has good results and you feel full :) Back to the sticks- a high glucose or protein reading really means "kidneys are under stress, kidneys are not preforming well". So once you retest (get a new sample, ASAP and retest that sample) and get the same results see a doc ASAP. Let them know your Lem history, current meds- even OTC meds, current diet. The doc will be on a fact finding mission to determine the cause and time is important. Good Pastures is rare in the general population so mention your risk for that specifically. I hope we don't see causes start to pop up in 2-3 years. Keeping your kidneys in good shape now is an important part in keeping them healthy and able to resist disease in the future.

Emzi

@Emzi

My partner had a numb face end of last year and then diagnosed beginning of this year when he had an episode of weak legs and severe fatigue. This soon cleared up and he was given lemtrada which he started in April. He had a couple of weeks in where it knocked him off his feet but since then he is completely back to normal. He lives a completely, completely normal life and MS isn't something we really think about anymore, after the initial shock earlier on in the year. He has his monthly blood checks and had his 3 month follow up last week where he was assessed to be "normal" in his neurological exam. Hoping he had it blasted before it got chance to really set in. Hope this helps x

melissag

@melissag

Unfortunately my neuro appointment didn't go as well as I had hoped, and he pretty much told me he doesn't have any experience with lemtrada, and that he thought putting me on it would be "escalating" my treatment from tecfidera. One minute they're telling me my MS is aggressive, and the next it's not at the point of needing that kind of treatment. Very frustrating!

Ranger246

@Ranger246

Has Lemtrada demonstrated the ability to halt disease process in SPMS?

US-Emma

@US-Emma

Sadly the studies have not been conclusive in this area. If it were me and I could get a doc to prescribe this tmt for SPMS I would take the shot. But I take more risks than some people.

TracyD

@TracyD

Oops .... I seem to have lost notifications on this thread and haven't replied :-( @US-Emma The Low carb diet is great for me, I've always been allergic to pretty much everything that touches me skin and since cutting back the carbs this has gone, also I had chronic IBS for 20 years which is also now something I don't even notice. The bonus item is that I get to have a few dry weeks every few weeks which is nice so I know I'm not a complete and utter lush :-) xx @melissa.g - well that certainly sucks ass is your neuro an MS specialist of an 'All purpose head tool' type neurologist ? I would expect if they were an MS specialist they would understand and support the treatment where as the head tool variety tend to be 'skittish'

melissag

@melissag

@tracyd he is a somewhat new MS specialist, and general neuro also. He just doesn't seem to think I should ultimately decide what medication I'm given, which is very frustrating!

TracyD

@TracyD

@melissa.g @orlando27 has already said everything. It's YOUR health and YOUR body and if the neuro can't give you a full medical reason as to why it is not suitable then find another one who is :-) Take a look at the Lemtrada for MS group on Facebook there are a lot of Canadian members, join, post and ask who in the area has a neuro who is Lem aware :-) xxx

melissag

@melissag

@tracyd @orlando27 I haven't given up yet! I'm in the process of finding another neurologist, and will keep trying! I just really feel that it could help me and I will keep trying!

US-Emma

@US-Emma

Where are you? I know one in the west that is prescribing it. He also is on the Canadian council that pushed for the protocols and approval. He will likely know a neuro in your province. Send me a pvt message if you want his email.

snowbeetle101

@snowbeetle101

Yes you need a new neurologist - I ummed and aaahed about changing and since I have never looked back. Now have a proactive team -makes such a difference. Worth the extra travel, you only have one life!