Methotrexate... almost 1 year on

[Krissie_Wright]

Just wanted to share some positive news....

That's me been taking MTX for about 8 -9 months now and I'm still only on 10mg/wk. I've not had to up the dosage any in order to keep my PsA at bay. I had a slight flare a couple of weeks ago but anti-inflammatories and some strong pain killers sorted it out. Apparently the cold had gotten to my joints and caused them to become more inflamed than normal.... One reason to leave frostbitten Scotland for Oz if you ask me.

I've not really been suffering any severe side effects, I have a dry mouth and feel lethargic about a day after taking the MTX but no other nasty surprises. My blood tests are all coming back fine (I'm still having them taken every 4 weeks which is a bit of an inconvenience) and both my GP and Rheumy are very happy.

BUT!!!! Taking the MTX has not done anything or my skin.. in fact it's actually made it worse. I flake a whole lot more and it itches so damned much.... I've never had this problem as I moisturise daily and exfoliate every couple of days....

Thankfully I have been lent a UVB unit from a colleague of my hubby so that I can home treat my skin... Derm don't really want to know now that I am on MTX, they think that it should be treating my skin and only suggest upping the dose (which I am totally against, I'll only increase it when I NEED to for my joints).

I'm hoping to see a difference in my skin soonish.

But, this brought to mind a question I thought of when I first had really bad problems with my PsA. It was just after my skin was cleared with UVB that I started having issues and I wondered if the treatment of the external symptoms had exacerbated the internal ones... Now I am wondering if the reverse could be true... My PsA is being treated so my skin is getting worse..

Anyone else relate to this?

Krissie

[Fred]

Hello Krissie, good to see you again, and thanks for keeping us informed on your treatment. I wish a few more would come back and tell us how things are going, as it's a great help to others.

I find my PsA gets worse with the cold and/or damp. Are you moving to Australia then?

Your theory of the PsA getting better the P gets worse, and vice versa is very interesting, I had never paid it much attention myself. I have found in the past if my joints flare up I tend to get psoriasis in the same place, but if the psoriasis flares up it doesn't always make my joints worse.

I too would be interested in what others have found.

[Caroline]

Hi Krissie, nice to hear from you again.

On your question on a relation between mTX and a negative to your skin I cannot confirm. Logically because I did not use MTX long enough. But as it is quite a poisonous stuff I could imagine it might have some effect you would not hope.
Right after I tried MTX for a few months, I started my own treatment with fumarates, my skin is clean and ok, my PsA is under control, not completely gone, but under control.
And I never have a lethargic feeling after using the medication, always power enough. Which may be a side effect on fumarates as it turns up your metabolism.

On the effect of a wet climate I have the impression that it has an negative effect, after staying in the sun for long time in the south of France I have the feeling that everything with my PsA is getting better. I can make longer walks in the mountains without painful feet.

I have a question for you... You state that your GP and your reumatologist are happy, but... My question is: Are you happy ? Do you think you can go like this for long?

But personally I am still not satisfied, I keep on looking for new things. I may have found something that sounds as very promising. I read a statement of a woman with psoriasis since her 14th, who was very hesitating to use medication, recently on het 54th she followed a new therapy on autoimmunsation and almost got complete rid of her skin problems and PsA
Read the following theory about it (which is translated with google translate).

Psoriasis is known as an autoimmune disease whose causative antigen is unknown. The curative results in this case suggested that this antigen is a bacterial factor. This assumption is confirmed by the study of Munz *, the presence of bacterial DNA from streptococci and staphylococci in the blood demonstrated by all members of a group of 20 psoriasis patients. In a comparable control group could in no case be demonstrated bacterial DNA. The study even demonstrated that there are specific forms of psoriasis in relation to specific bacteria. DNA of streptococci was present in patients with psoriasis guttate (drop-shaped psoriasis) and DNA stapyhlococcen in patients with plaque psoriasis shaped. In this patient, there was in the past, has the appearance of bacterial infection with both types have been.

Tantalizing Isn't it?

Caroline

[Krissie_Wright]

Hey Caroline..

I am more than happy with how my treatment is going. I'm a medical Microbiologist and very well versed in both immunology and infections as well as genetics and pharmaceutical side effects
which is why I refuse to up the dosage of MTX unless I really have to in order to alleviate my arthritis.

I read with great interests the posts on bacterial infection research relating to psoriasis but since it is such a multifactorial condition not every possible answer can account for every case. I know I had psoriasis before having any infections, it developed when I was a child of 4 and certainly there was no such thing as stress in my life at that time.

I think psoriasis is very much like SLE in that there are many triggers which could lead to the activation of the numerous genes which have been identified to play a role in the development of the condition.

My skin and I came to an understanding a very long time ago. I am not ashamed or embarrassed to show it off in public and, so long as it doesn't irritate me too much (with regards to itching, pain etc) I just moisturise it daily with 100% Aloe and leave it be.

Krissie.

[Caroline]

Hihi, you will be very difficult to convince I guess.

I base my writings on the research and results of a doctor that has been extending the research of dr.Scheckendieck and who has dedicated the recent twenty years of his life to psoriasis.
I also have my personal experience to base it on.
Certainly I guess genetic inheritance is very important in the start of psoriasis. My dad had it also, and my sister also, but still the treatment can be different.
The bacteriological theory might also explain why certain very rigid diets do really work against psoriasis.

Caroline

Oh and btw, I am also going to try something quite alternative, called family constellations

[Amy]

Hi Krissie,

Was wondering if I could ask a few questions about methotrexate. I took my first dose today I don't think it's a high dose at the moment, just 5mg and I'm aware of possible side effects but I had a dry mouth all day and been very hot (I've had the window of our office open while its been snowing) and can't find either of these effects in my booklet or info the doctor gave me. Have you heard of these effects before? (I ask as you mentioned your job and suspect you know more than I do right now)

Thanks

[Krissie_Wright]

Hi Amy,

When I first started taking MtX I found that I had a very dry mouth for a day or two after taking my dose. I found sucking on mints helped just to keep the mouth feeling normal. As for running hot, that is a very common side effect but it won't be found in the literature as it's not a medically relevant side effect. I still run hot on the day I take MtX but you do get used to it. The dry mouth settles down after a couple of months but if it continues I would maybe speak to your GP.

Hope that's helped.

Krissie

[Caroline]

I found this, pointed to it by someone i spoke with and who developed PML, because of too low lymphocyte counts. Don't mind the FDA in this, that is only a burocratic instance, it is the points on immunosuppressors that count.

As most of our medication against psoriasis an PsA, is based on immunosuppressors like methotrexate, biologicals and also dymethylfumarates, which all suppress the immune system in some way, we have to take care that our lymphocyte count does not go to low....
I feel this as an important warning for all of us.



FDA Approves New Test for Brain Infection

FDA Permits Marketing of First Test for Risk of Rare Brain Infection in Some People Treated with Tysabri

Today, the U.S. Food and Drug Administration allowed marketing of the first test to help determine the risk for a rare brain infection called progressive multifocal leukoencephalopathy (PML) in people using the drug Tysabri (natalizumab) to treat multiple sclerosis (MS) or Crohn’s disease (CD).

The Stratify JCV Antibody ELISA test, when used with other clinical data from the patient, can help health care providers determine the risk for developing PML in MS and CD patients.

The John Cunningham virus (JCV) is a common virus that many people have been exposed to at some point in their lives, and is generally harmless. However, people with weakened immune systems, such as patients using immunomodulatory therapies like Tysabri, have an increased chance of developing PML from JCV. PML usually causes death or severe disability.

Currently, there is no treatment, prevention, or cure for PML, and no certain way to predict who will develop it. This test in conjunction with other factors listed below will allow the physicians and patients to carefully assess the risks and benefits of continuing Tysabri treatment depending on the complete clinical information for the particular patient. The following risk factors have been identified that increase the chance of Tysabri-treated patients developing PML:

• the presence of anti-JCV antibodies, which reflects prior exposure to JCV
• treatment with Tysabri for a significant period of time (longer than 2 years)
• treatment with certain medicines that can weaken a patient’s immune system (immunosuppressants such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide, and mycophenolate mofetil) before receiving Tysabri.

The risk of getting PML is greatest (about 11/1000 patients treated) if the patient has all three of these risk factors.

“PML is a fatal infection reported in patients undergoing immunomodulatory therapy,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics in FDA’s Center for Devices and Radiological Health. “This test gives doctors an additional means to determine if MS or CD patients undergoing Tysabri therapy are at increased risk for developing PML.”

The FDA reviewed data for the Stratify JCV Antibody ELISA test through the de novo reclassification process, a regulatory pathway for low- to moderate-risk medical devices that are novel and not comparable to an already legally marketed device.

In a separate action, the FDA also announced updates to the drug label for Tysabri. The change includes information that testing positive for anti-JCV antibodies is a recently identified risk factor for developing PML in patients treated with Tysabri for MS or CD.

The Stratify JCV Antibody ELISA test should not be used on its own as a basis for determining the risk for developing PML in patients on immunomodulatory therapy or for making clinical decisions. The test cannot be used to diagnose PML.

The test is for professional use and by prescription only and is to be performed only at Focus Diagnostics’ Reference Laboratory. The test is not intended for blood donor screening. The performance of this test has not been established for use in neonates, pediatric patients or any other immunocompromised patient populations.

The Stratify JCV Antibody ELISA test is manufactured by Focus Diagnostics of Cypress, Calif.

Tysabri is co-marketed by Cambridge, Mass.-based Biogen Idec and Elan Pharmaceuticals whose U.S. operations are based in South San Francisco, Calif.

SOURCE:

FDA

January 23, 2012

[Krissie_Wright]

An Interesting Read Caroline,

However, this report relates to PML developed by someone whi had been on MtX previously who was given this new drug (Tysabri). Unless you are unfortunate enough to have both PSA and crohns/MS and be taking both these medications as well as testing positive for JCV I don't see that as too much of a risk.

With MTX at the levels given for PSA there is very little likelihood that your white blood cell count will drop to the levels indicated by PML. The reason that blood samples are taken regularly is to ensure that you don't have TOO many white blood cells which indicates an infection and to check liver function.

Krissie

[Amy]

Just a quick update on the MTX (sorry for being quiet - ive moved house and not sure where the last few weeks have gone).

I can happily report that MTX hated me and vice versa and as a result I have been taken off the stuff after 2 does, my liver count was already affected, sickness was unbarable and I have had a cold for 2 weeks now which my husband got over in 4 days - overall relieved is an understatement.

Now onto the biologicals - I have had a load of blood tests and am back at the hospital on 1st May - strangly enough dispite stress of moving my P is clamer than it has been for quite some time - i do wonder if it calms down when i am too bucy to care about it!

enough rambling :o)